Many of the long-term services and supports that many people with disabilities need in order to live and work—such as personal attendant care—are not covered under most health insurance plans, and are prohibitively expensive for all but the wealthiest among us. As a result, if, like me, you require long-term care due to disability, you likely have only one option for access to coverage: Medicaid. For many people with disabilities, access to long-term care through Medicaid comes from eligibility for Supplemental Security Income (SSI). SSI also provides a limited cash stipend of up to $733 per month and beneficiaries must maintain assets below $2,000 in order to remain eligible.

The SSI program has powerful work incentives to enable beneficiaries to reach their potential in the workforce. For example, SSI removes one dollar in benefits for every two dollars earned, so that beneficiaries can gradually work their way off of cash benefits while maintaining access to the long-term services and supports that Medicaid provides.

Even if beneficiaries start earning enough to completely work their way off of cash benefits—which occurs when earnings exceed roughly $1,540 per month—they will continue to maintain their SSI and Medicaid eligibility under a special provision called “1619(b)” (as long as they continue to meet the program’s asset limits). Under this provision, beneficiaries can earn up to a certain threshold that varies by state, ranging from $27,244 per year in Alabama, to $65,144 per year in Connecticut. Additionally, SSI beneficiaries who have high medical costs can request a higher “individualized threshold.” While people do not receive a monthly cash benefit when they earn more than the SSI income limit, as long as they remain below their earnings threshold (and maintain assets below the limit) they continue to be a part of the SSI program and have access to Medicaid, including the long-term care many need in order to work. With the help of these work incentives and supports, more than 312,000 SSI beneficiaries were working as of the end of 2013.

Obstacles to Long-Term Employment

While the SSI program’s work incentives and supports are extremely helpful for workers with disabilities, beneficiaries with long-term employment can face a number of challenges. For example, the ridiculously low SSI asset test of $2,000—which has not budged in nearly three decades—is an ongoing struggle. The asset limit may not be a problem for some beneficiaries without work who are living on an SSI benefit of $733 per month. However, if you’re making $50,000 a year, the asset test means having to spend what you earn each and every month and never being able to save for the future. Some might say that workers with disabilities who can earn $50,000 shouldn’t remain eligible for SSI and Medicaid. However, if you have $60,000 worth of healthcare costs, you couldn’t survive—and couldn’t work—without access to the long-term care these vital programs provide.

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Workers with disabilities whose earnings exceed their threshold limit face challenges as well. Take Jenny. At the age of 16, she suffered a spinal cord injury in a skiing accident that resulted in quadriplegia.  She went on to college and has worked as a teacher in California since graduating. Jenny is a shining example of a person who has been able to thrive under SSI’s system of work incentives. However, after many years as a teacher, Jenny’s annual salary increases pushed her above her individualized threshold, and she was recently informed that she is no longer eligible for SSI and the Medicaid that comes with it. Jenny thus faces a catch-22: California’s school system does not allow Jenny to reduce her hours unless she works a two-thirds time position, which wouldn’t give her enough income to continue to pay her monthly bills and survive. But she also doesn’t earn enough to pay for her long-term supports and services out of pocket if she loses her Medicaid coverage. Don’t we as a society want Jenny to thrive as a teacher educating our children and also be able to get the care she needs in order to work and live?

Medicaid Buy-In Programs

Medicaid Buy-In (MBI) programs were established to address this challenge. They enable workers with disabilities like Jenny to “buy into” Medicaid by paying a premium.

Nearly every state has established an MBI program, each with its own financial eligibility requirements. While these programs enable many workers with disabilities to climb the economic ladder without losing access to the long-term care they need, many have income limits that are too low to help workers like Jenny. For example, California’s MBI program has a net income cap of 250% of the federal poverty level—far below Jenny’s current income. Only 15 states have programs with higher income limits than California’s, including three that have no income cap at all.

In addition to raising the earnings cap on eligibility for long-term care through Medicaid, we also need to address the problem of portability. As states’ MBI eligibility criteria vary widely, eligibility for one state’s program doesn’t guarantee eligibility for another in the event of a move. What we really need is a national Medicaid buy-in program that allows workers with disabilities to continue to climb the economic ladder and seek job opportunities without fear that they will lose the long-term care they need in order to work.

Out of Options Post-Employment

Longer term, Jenny will face a challenge that many workers with disabilities confront when employment stops due to retirement or a medical setback. This is because the Medicaid work incentive policies that allow some of a worker’s income to be disregarded for Medicaid long-term care eligibility do not apply to “unearned income” such as SSI benefits, annuities, or short- or long-term disability payments. While policies vary across states, this can be devastating for people suddenly living on a fixed income, who then face requirements to “spend down” a significant portion of that income on medical costs in order to maintain their eligibility for long-term care, leaving them with insufficient income to live on.

This is the future that lies ahead for many successful workers with disabilities. The federal government spends billions of dollars to help persons with disabilities return to work—but this misguided policy effectively requires you to work until you die, or to live in abject poverty in order to maintain access to the long-term care you need in order to live. This half-empty cup continues to impede progress toward the ADA’s vision of economic conclusion and participation in society.

Long-term, we should work together to establish a social insurance program that ensures access to long-term care. In the meantime, Congress should enable MBI participants to retain their access to Medicaid long-term services and supports despite medical setback or retirement. And it should eliminate or significantly raise the 1619(b) asset limits—and the SSI asset limits generally—so that workers with disabilities may save and plan for a modest retirement. Twenty-five years after the passage of the ADA, these measures would finally provide workers with disabilities like Jenny and I the opportunity to achieve the full American Dream.

– President George H.W. Bush, at the signing of the Americans with Disabilities Act

 The Americans with Disabilities Act (ADA) turns 25 on Sunday, and it has done a tremendous amount to break down barriers and open doors for people with disabilities. Many of my closest friends and colleagues count themselves members of the “ADA generation” and proclaim with confidence that they would not be where they are today if not for the passage of this watershed legislation. But as we celebrate this important landmark, it would be a grave mistake to declare that the struggle for inclusion is over as a great deal of work remains.

As I’ve written here before, disability is both a cause and consequence of poverty, and twenty-five years after the signing of the ADA, the two still go hand in hand. The poverty rate for working-age people with disabilities remains more than double that for people without disabilities.

People with disabilities are also significantly more likely to experience material hardships—things like food insecurity; not being able to pay rent, mortgage, or utilities; or inability to access needed medical care—than people without disabilities, even at the same income levels. The same is true for families caring for a child with a disability.

People with disabilities are also nearly twice as likely to lack even modest savings to help them weather job loss, an unexpected bill, or other financial shock, according to the National Disability Institute.

As we look ahead to the next 25 years of breaking down barriers, it’s time to examine our own work as advocates for change. The next wall that needs to come down is the one that keeps disability advocacy in its own bucket, separate and apart from the broader fight for a fair economy and equal opportunity. Until disability inclusion—both social and economic—is a core part of the economic justice movement, we’ll continue to miss a huge piece of the puzzle.

Much of the economic agenda to break the link between disability and poverty is already mainstream. Raising the minimum wage. Boosting the Earned Income Tax Credit for workers without dependent children. Expanding Medicaid. Paid leave and paid sick days. Strengthening Social Security (including updating the woefully outdated Supplemental Security Income asset limits). Add in affordable, accessible housing; accessible transportation; and ensuring access to long-term services and supports and we’ve got a to-do list that would go a long way toward reducing poverty and expanding opportunity for people with disabilities.

As President George H.W. Bush’s signed the ADA into law, he closed his remarks with this: “Let the shameful wall of exclusion finally come tumbling down.”  Let’s take that to heart not only as we fight for inclusionary social and economic policies, but as we shape our work and tactics as change-makers.

It is in that spirit that throughout next week, TalkPoverty.org will feature posts from disability leaders, all exploring the link between disability and poverty and solutions that would increase economic opportunity for people with disabilities. This week is not intended to be a comprehensive examination of the topic. But we hope it will help advance this important conversation, and we look forward to working with our readers, contributors, and partners to break down the silos that have kept disability separate from the broader fight for economic justice for far too long.

You work your whole life. You pay your taxes – boy, do you pay your taxes. Unlike upper-middle and upper-class folks who have tax preparers and accountants to help them with their taxes and find deductions and loopholes and so forth, you get slammed every year and you can barely keep afloat…then, the worst happens.

You get old and disabled and you can’t work any more and your disability/social security isn’t really enough to live on and you never were able to get much retirement money together so the government gives you something called SSI. Between that and Social Security you still don’t have enough to live on but what can you do?

To add indignity to insult, the government tells you how much money you can have in the bank and it ain’t much: just $2,000.

If someone lends you money to get by you can’t repay the debt out of your Social Security or SSI because the government watches everything you do and they don’t want you to borrow money or pay it back because the bottom line is the government is afraid to be cheated. Sadly enough, they are mostly afraid of being cheated by poor people. Rich people seem to be able to get away with murder.

Now a bunch of politicians and well-wishers are trying to change the laws a little bit…not majorly, just minorly, to make it a little easier for us to survive. And yet they will run into obstacles.

I wish everyone who opposes making life a little better for poor old disabled people (or even poor old people) would put $10.00 in an envelope and send it anonymously to a poor old person.

In the meantime, I’m looking for a part-time or freelance job. I’m 72 and I’m broke and can’t afford to live on Social Security and SSI and I don’t really know what to do. Also, I’m in dialysis, so that chews up around four days a week. So I’ll keep looking for a job, albeit futilely, and if I can figure out a way to rob a bank I might do that…I have an electric wheelchair and could do a slow-speed chase down the street if I had to.…

So, whilst I’m thinking of it, if anyone out there wants to offer me a job I would be extremely happy, and also, I could use a nice little house with a yard for my dog and a couple of tomato plants and maybe a lemon tree or an avocado tree. Just thought I’d put that out there.

Cheers to all, and remember, wait for the supermarket sales! And never give up – fight to the bitter end.

Et tu, Orange is the New Black?

The Netflix drama is back with a third season, and if you’re like me, it monopolized the better part of the last two weekends. The show deserves credit for sparking dialogue and increasing awareness about mass incarceration in the U.S., particularly among people who hadn’t previously considered criminal justice reform to be their thing.

The show’s typically smart writing and masterful treatment of a serious and complex topic made the first episode all the more disappointing.

One of the very first scenes of the third season is a flashback to the character Pennsatucky’s childhood. We watch as her mother forces her to chug an entire two-liter bottle of Mountain Dew. Pan right to the sign showing us that they’re at the Social Security Administration office. Then we hear Mom say, with a young Pennsatucky now bouncing off the walls behind her, “So I understand, Supplemental Security Income benefits for kids like mine are $314 a month, is that right?”

The implication is clear: Mom is attempting to simulate the symptoms of ADHD in her child in order to fraudulently obtain SSI benefits.

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This scene caused me to have several flashbacks of my own. First, to the mid-1990s, when a flurry of media reports accused parents of “coaching” their children to “act disabled” in order to feign eligibility for SSI benefits. The “crazy checks” media frenzy, as it came to be known, spurred Congress to narrow the program’s eligibility rules, causing more than 100,000 children with disabilities to lose critically needed benefits. The media claims were later shown to be baseless, but the damage had already been done, and Congress had already legislated by anecdote.

I also flashed back to 2010, when media allegations accused parents of seeking psychotropic medications for their children in hopes of SSI eligibility. These claims were similarly debunked after multiple investigations. But again, the media allegations rang loudly in the halls of Congress, leading to hearings and yet more proposals to cut SSI.

My head swirling, I was next transported to 2012, when New York Times columnist Nick Kristof sparked yet another kids’ SSI media hubbub by accusing parents of pulling their kids out of literacy programs in order to obtain SSI benefits. Mr. Kristof’s claims that the program incents parents to keep their kids from learning to read were similarly unsupported by the facts—but that didn’t stop NPR from doubling down on his claims with their own (widely discredited) “reporting” just a few months later. Legislation that would kick young people with disabilities off of SSI if they miss school is now pending in Congress.

Each set of media allegations—as well as the disappointing OITNB scene—reflects a continued lack of understanding of mental impairments. They perpetuate the stereotype that if you have a visible physical impairment, you’re ‘truly disabled,’ but if you have an invisible mental disorder, your impairment is somehow less real, or less legitimate.

What’s more, each set of media attacks—as well as the OITNB scene—reflects vast ignorance about the SSI program, perpetuating the myth that it’s easy to get benefits. Getting hyped up on a caffeinated drink before you walk into the Social Security office may make for entertaining TV, but it won’t get you anything in real life.

SSI serves as a vital lifeline for families caring for children with disabilities. It makes it possible for families to care for their children with disabilities at home and in their communities, instead of in costly and isolating institutions. Only children with the most severe impairments and illnesses qualify for SSI. The majority of children who apply are denied, and fewer than 1 in 4 U.S. children with disabilities receive benefits.

Raising a child with a disability is extraordinarily expensive. Families caring for children with disabilities are more than twice as likely as other families with children to face material hardships such as homelessness, food insecurity, and utility shutoff. The financial support that SSI provides helps to offset some of the commonly incurred costs, including special therapies, diapers for older children, adaptive equipment, and transportation to doctors and specialists, many of which are not covered by insurance or have high copays. SSI benefits also replace a portion of lost income when a parent must stay home or reduce her hours to care for a child.ADHD is a neurobiological disorder that affects 5 to 8 percent of school-age children.

But only the most severely impaired children are eligible for SSI. More than 75 percent of children with ADHD who apply for benefits are denied, and just 4 percent of U.S. children with ADHD receive SSI.

Moreover, qualifying for SSI on the basis of ADHD—or any other mental or physical impairment—requires extensive medical evidence from approved medical sources (including physicians and specialists) documenting the severe impairment as well as its resulting symptoms. A child’s impairment must result in marked and severe functional limitations and must be expected to last at least 12 months or to result in death.

In fairness to Orange is the New Black, the show is fiction. Unlike the media frenzies over the years, it didn’t claim to be reporting the facts. But, as with the latest season of House of Cards, which was infused with “real-world lies” about Social Security—it’s “sucking us dry”… “entitlements are bankrupting us”—the silver screen’s treatment of important public policy issues has a very real, and potentially destructive, impact. (Coincidentally or not, House of Cards is also produced by Netflix.)

Media portrayals that reinforce myths about mental disorders do us a significant disservice and contribute to the harmful denial of mental illness that persists even in the 21st century. Media portrayals that reinforce negative stereotypes about vital programs and the individuals helped by them are similarly dangerous, sowing the seeds for cuts that will make vulnerable people’s lives all the more difficult.