The Post’s central assertion—flanked by an interactive map—was that as many as one-third of working-age adults in rural communities are living on monthly disability checks. But the data analysis supporting this argument doesn’t hold up.

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In a sidebar to the article, the Post says they used publicly available county-level data from the Social Security Administration (SSA) to count “every working-age person who receives benefits through the Supplemental Security Income (SSI) program, the Social Security Disability Insurance (SSDI) program or both.” But the Social Security Administration doesn’t publish the data needed for that calculation. In an email response to our request for these data, the SSA  confirmed that these data are “not readily available.”

The Center for American Progress also reached out to the Post to ask about their data. The Post confirmed in an email exchange that they did indeed rely on publicly available data, and identified the specific reports, tables, and figures they used.

We tried to replicate their analysis, and here’s why their numbers are flat-out wrong. (Warning: We are about to dive head-first into the weeds.)

The analysis overcounts working-age people receiving disability benefits by nearly 500,000. The SSA doesn’t publish county-level data on SSDI beneficiaries in the age range the Post defines as “working age” (18 to 64). SSA’s OASDI Beneficiaries by State and County report does provide county-level data on SSDI beneficiaries (Table 4), including disabled worker beneficiaries. However, of the 8,909,430 disabled worker SSDI beneficiaries whom the table breaks down by county, 472,080—or about 5 percent—are age 65 or older. Including these older disabled workers would inflate the share of working-age people with disabilities.

It overcounts “disabled adult children” by about 750,000. About 1 million SSDI beneficiaries are disabled adult children (DACs)—people whose disability onset occurred before age 22 and who are insured for SSDI benefits based on a parent’s work record. Since the Post claims to count working-age people receiving SSDI, SSI, or both, they need to include working-age DACs. But—contrary to the Post’s data sidebar—there are no data available on working-age DACs at the county level.

The same SSA table from above does provide county-level data on one group of “children” receiving SSDI—totaling 1,755,276 in 2015. The problem is, these children aren’t disabled adults—they’re actually the offspring of disabled workers. Most are under age 18, and most are not disabled. Not only does erroneously using these data mean including minors without disabilities, it also inflates the number of DACs by about three-quarters of a million, since the total number of DACs aged 18-64 is 977,776. What’s more, offspring of disabled workers and DACs are likely differently distributed across counties, creating problems in county-level comparisons.

It can’t accurately adjust for double-counting the 1.3 million working-age people who receive both SSDI and SSI (a.k.a. “concurrent beneficiaries”). About 1.3 million working-age Americans receive a small amount in benefits from both SSDI and SSI—generally people with very low incomes and limited resources. To avoid double-counting these folks, the Post would need county-level figures on concurrent beneficiaries. But here they run into another problem: SSA doesn’t publish county-level data on working-age concurrent beneficiaries. The Social Security Administration does provide the number of people receiving both SSI and Social Security benefits of any type (Table 3), but that figure also includes people receiving any other kind of Social Security benefit (like survivor or retirement benefits). What’s more, they also include concurrent beneficiaries who are children and adults 65 and older. Both of these issues make it impossible to calculate for working-age beneficiaries receiving both SSDI and SSI at the county level. So these county-level figures can’t give the Post what they need to accurately mitigate their double-counting problem.

It’s missing data for a whopping 106 counties. Mostly because of small population size, SSA doesn’t publish county-level data on SSI beneficiaries for 106 counties. This would be problematic for any county-level analysis. But it’s especially notable given that the Post’s article focuses on rural counties—as some 97 of the counties with missing data are rural. It’s unclear how the Post treats these counties in their analysis.

This might seem like a lot of trouble to go through to explain two inaccurate newspaper articles. But the thing is, misleading media reports have consequences—particularly in political climates like the one we’re living in right now. Just this week, White House budget director Mick Mulvaney once again opened the door to cutting Social Security Disability Insurance, despite President Trump’s pledge not to cut Social Security. Misleading media reports based on inaccurate data analysis risk giving Mulvaney and others cover to slash critical programs like SSDI.

Media covering this important program should get their facts straight before going to press.

Tracey: And I’m Tracey Ross.

Rebecca: So, Tracey, before we dive into what today’s episode is gonna be about, I thought we should do the number of the week.

Tracey: All right, let’s do it.

Rebecca: Ready?

Tracey: I’m ready. I’m burning up.

Rebecca: She’s ready! She’s so ready! You are so ready! All right.

Tracey: Give it to me.

Rebecca: The number of the week is… 25.

Tracey: Okay. So, since I was involved in the planning of this episode-

Rebecca: I didn’t really hide the ball there, did I?

Tracey: No. I’m gonna go out on a limb and say that it’s the number of years since the Americans with Disabilities Act was passed.

Rebecca: Ding, ding, ding! We have a winner. Yes, indeed. It is the 25^th anniversary of the ADA. It happened just this past weekend. And actually we’ve been celebrating all week long over at TalkPoverty.org with what we’ve been calling talkpoverty and disability week, because the intersection of poverty and disability is all too rarely discussed.

Tracey: We’ve got some great pieces, some personal testimonies, some work by advocates in the field that are working closely on this issue, so please check out the pieces they’re fantastic. They’re on TalkPoverty.org.

Rebecca: Greg will really appreciate what a solid plug we’ve just put in.

Tracey: You’re welcome, Greg.

Rebecca: But we also have a fabulous lineup on today’s show – and, in fact, many of the folks who have been contributors to TalkPoverty and Disability Week are actually gonna be guests on our show today. So we-

Tracey: I’m excited. I know! I was like, “wow!”

Rebecca: I’m excited too. I should have paused for excitement there.

Tracey: So who do we have?

Rebecca: We have Alice Wong, she’s the founder of the Disability Visibility Project, which is a partnership with StoryCorps.

Tracey: We also have Michael Morris, executive director of the National Disability Institute.

Rebecca: Courtesy of the Vera Institute, we will also be featuring some remarks from attorney and civil rights activist T.L. Lewis. Also the founder of HEARD, an important organization that does advocacy on behalf of deaf individuals. But first we’re joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society.

Tracey: You’re listening to TalkPoverty radio. I’m Tracey Ross. I’m joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society. Thank you for joining the program.

Talley: Thank you for having me. It’s very exciting to be here. And happy anniversary of the Americans with Disabilities Act.

Tracey: Yes, and happy 25^th anniversary back to you. And we’re excited to be commemorating this anniversary on today’s show. So I want to start out by asking, what is the significance of the ADA in the work that you do?

Talley: The ADA is at the heart of the work that I do. My work is based on the United States Supreme Court’s Olmstead decision. Olmstead was decided in 1989; it is the most important civil rights decision for people with disabilities. It’s often called the Brown v. Board of Education decision for people with disabilities, because it is a decision that is transforming our country’s infrastructure for people with disabilities from a system that was all about institutionalizing people – separating them from society – especially here in Georgia, where we had thousands and thousands of people in institutions – and instead, providing them the accommodations and supports so they can live full and meaningful lives in the community, so they can work and live in their own homes, and be as much a part of the community as every other person. So the ADA is at the heart of the work I do, and the reality is just because the U.S. Supreme Court issued a decision eight years after the ADA was passed and told the country that it needed to provide supports and services for the community, that’s still not happening. And so my work is about really realizing the promise of this extraordinary Supreme Court decision, and this extraordinary Act, the Americans with Disabilities Act.

Tracey: And you wrote this week for TalkPoverty.org about these very issues – the ADA and the Olmstead case. And you say that people are still segregated into institutions and excluded from participating in society. In what ways have you seen this occurring?

Talley: Well, just think about it. And, I’m sure, in the neighborhood that you are in – and every community across this nation – we have nursing facilities. And nursing facilities are basically institutions that have a lot of people who have disabilities who could be living in the community if we had a much more robust system of homecare and support, so that people don’t actually have to go into a nursing facility – and that’s just one example. In Georgia, we have institutions that were created in 1842, and still exist today – where people with developmental disabilities and people with mental illness are confined, many times for years and years. Now that’s changing in Georgia because we’ve been at sort of the forefront of Olmstead because of the Supreme Court case, and because the Justice Department came back in 2007 through to the present, and has really sort of enforced Olmstead here. But we’ve had a long way to go, and it’s systems that exist not only here but throughout the country. I was recently in New Jersey, where there are thousands of people who are still in institutions.

Tracey: And we’re using, you know, ADA and Olmstead back and forth. Can you actually just explain for our listeners who might not be familiar with the law and with the case, how these relate to one another?

Talley: I would love to. So the ADA – what most people are familiar with – the Americans with Disabilities Act – are – is the fact that the Americans with Disabilities Act requires either a reasonable accommodation or a reasonable modification. And basically what the ADA says is that if someone wants to work in a job, then the employers should provide some sort of modification or accommodation so they can get equal rights to that job as other people. It’s also thought of with respect to architecture and infrastructure so that if a wheelchair ramp would enable someone to get inside a courthouse, or get inside a school, or get inside their home or workforce. And that’s sort of what people think of with the ADA and the reasonable accommodation is at the heart of the Olmstead case. If we step back, and look at when the Americans with Disabilities Act was passed, Congress issued a number of findings. And in those historical findings, which Congress made at the very beginning of the Act, Congress said in this country, people with disabilities had historically enough to that time of the Act, in 1990, been discriminated against and segregated. And one of the ways that they had been discriminated against and segregated was by institutionalizing them. Essentially, if you institutionalize someone, you are separating them from everyone else. You are also making it very difficult for them to go to the store, for them to have a job, for them to be part of the day to day life that everyone else is a part of. And so, when Congress made those findings, they then said that people with disabilities must be included as long there is a reasonable accommodation. And “reasonable” is a word that’s used throughout the law, and most people think of it with respect to “reasonable doubt,” but pretty much – most of the law has some sort of reasonableness component and that is, essentially: “what would an objective person think is reasonable?” And so, whatever that is, then you apply it with the combination, so: how can you accommodate someone to include them? And when the Olmstead case was brought on behalf of two women, Lois Curtis and Elaine Wilson, who were here – just outside of Atlanta, Georgia. And they had repeatedly been held in Georgia Regional Hospital in Atlanta, which is our psychiatric hospital locally. And their doctors said they were perfectly capable of living in the community, but they needed support. And the problem was Georgia only provided those supports in the institutions. So if they were gonna get the supports they needed, they had to essentially be segregated from society. So the argument that happened in the Olmstead case was a simple “reasonable accommodation” argument – that it would be a reasonable accommodation for the state of Georgia to enable them to live in the community, and provide the supports they’re providing to them – just not in the institution, but in the community. And with that simple statement by the United States Supreme Court, the walls of segregation that have separated so many people with disabilities not only here in Atlanta – but in every city, every state in this country – have begun to come down.

Tracey: And yet, without enforcement the ADA and what Olmstead provided would be a theoretical framework. So, what is the role of an organization such as yours in ensuring that these rights and protections are actually experienced by people with disabilities?

Talley: That’s been one of the great learning experiences for me in this work. I – go to law school, and you see these Supreme Court decisions, and you learn all about them, and you sort of think that that – that will change things. But if you really spend your time looking at it, and remember what happened with Brown v. Board of Education, just because you have the Supreme Court say something, doesn’t mean that a state’s actually gonna do what the Court said. Going back to Brown v. Board of Education, and Olmstead is very much the same thing. You had the states fighting all the way up to the Supreme Court, and then the Supreme Court turns around and says “State, you have to do it.” And so the state that has fought it all the way up to the highest court in the land, now has the obligation to carry it out – and so are they actually going to do what the Court has said when they’ve been fighting it all along? What we saw, of course, with school integration was “no,” that the states simply were not going to carry it out, and that the courts had to get more and more involved. And with disabilities we had sort of the same experience. In 1999, we had the decision; the state of Georgia decided to do a lot of committees. They basically created a blue ribbon commission, they created a Governor’s commission, to look at Olmstead. They had the legislature do some findings. They did a lot of planning, but very little implementation, of how the state was gonna actually provide the reasonable accommodation – not just to Lois and Elanie, who were the two plaintiffs, but to all people with disabilities who were confined in institutions. And then what really became the impetus for change in this state was that we were involved in the last month of cases and got The Atlanta Journal Constitution involved, which is our newspaper here, and they did a huge expose on all of the problems inside of the hospital. They found over 100 people who, as they put it, “would have lived but for the fact that they were in the hospital,” and who died in the hospital. And there were all sorts of incidences of abuse and neglect. So while we were finding these cases – and the role of our organization as a legal services organization and the role also of protection advocacy organization is to represent individuals. But we needed additional help, and the newspaper article brought the United States Justice Department, and ultimately resulted in a settlement in 2010 where Georgia now not only had to serve Lois and Elaine but this settlement was a statewide settlement that Georgia was finally gonna close these hospitals that have been around since 1842 – not only close them, but provide the supports and services to the community for individuals throughout our state. And this settlement that happened here in Georgia – similar settlements are happening across the country, because the Justice Department’s Civil Rights Division has now made Olmstead one of its number one priorities. And if you go on the Justice Department’s Olmstead website, you can see cases are happening in pretty much every state in the land to ensure that everyone with a disability doesn’t have to live in an institution, but can live full and meaningful lives in the community.

Tracey: And I really appreciate you drawing some of the comparisons between the Olmstead case and Brown v Board and something we’ve talked about a few times on the show is the need for other social justice movements to include a disability lens. So whether it’s, um, you know a racial justice cause or LGBT rights there are obviously in all of these social movements people who experience disability. How do think that other movements can do a better job of incorporating the disability lens?

Talley Wells: There’s a woman named Kate Gainer who lives here in Atlanta and she was part of the civil rights movement for African Americans and people of color. She says that when the laws changed, and society changed, she was able – she had the right to get in the front of the bus but it wasn’t until much later, and the push from the disability rights movement that she was able to actually get on the bus because she uses a wheelchair. Every single group- socio-economic, ethnic, racial, age- has people with disabilities, and they are vibrant parts of that community. Yet many times they’re still excluded. I had a friend come and meet with us for, um, a gathering who is a disability rights advocate and uses a wheelchair. And we realized that in this group of fairly progressive people, twenty people, she could not go to a single one of those peoples house because she could not get into their house. That’s what it means to be excluded, to not go over to your friends’ houses, to not be able to get into the workforce. So, and another favorite example I have is there is a museum called the Disability Right Museum Right Museum on Wheels that has been part of this extraordinary celebration of the American’s with Disabilities Act that is traveling across this country to celebrate the twenty-fifth anniversary. And in that museum there is a letter from President George H.W. Bush who signed the Americans with Disabilities Act and he said that he was extremely proud, that is one of the most important things he did in his administration but it really came to his understanding of how important this was, and what it meant to have simple things like curb cut when he became someone who uses a wheelchair. And so that’s something he wrote in March of this year and it shows that President Bush, I’m sure, never thought that he would be a person with a disability. But it can happen to any of us. There are people with disabilities that have been President, that are part of every movement and it is so integral to include the disability rights movement. I enjoyed watching the celebration of the civil rights movement, at the LBJ, the Lyndon Baines Johnson, anniversary of the Civil Rights Act and the disability rights community did a great job of talking to the LBJ library about making sure that they included people with disability. And that wasn’t necessarily the way the program was going to be at first, but they changed it because the disability rights community stood up and made it clear that that’s absolutely a part of the civil rights movement.

Tracey: And one way that you’re disseminating more information about disability rights and getting resources to advocates is through your new website, Olmsteadrights.org. Can you tell me what prompted the creation of this site and what resources does it provide?

Talley: I’m so proud that you have brought this up, because we are so proud of Olmsteadrights.org. OlmsteadRights the impetus for the creation of this was that we have this amazing transformation that’s happening throughout the country, changing from a a nineteenth century system of segregation and institutionalization to a twenty-first century system that is not even a system – it’s an understanding that people with disabilities don’t have to be in institutions they can live full and meaningful lives in the community. Of course most people with disabilities don’t live in institutions, but there are so many of them that do and that even though this whole transformation is happening, so few people know about it. So we decided to do three things: We wanted to tell the story of people with disabilities who had been in nursing homes, who had been in institutions for developmental disabilities, who are now living full and meaningful lives in the community. We also wanted to tell the stories of people who were able to avoid going into the institutions. So we have lots and lots of stories, one of my favorite stories is my former client, Harold Anderson, who is now my boss because he’s on the board here at, at the Atlanta Legal Aid Society. We advocated for him, we had a mediation set up in the nursing home where he had been living, he had lived for I think seven years in various nursing homes, and we got him out, he’s now not doing all sorts of things in Atlanta including being on the executive committee of our board. So we wanted to tell stories like Harold’s- of real people- and we also wanted to ensure that self-advocates, people with disabilities, families of people with disabilities could advocates for themselves based on Olmstead. And third we wanted to provide legal tools and so we have a lot of legal tools, legal pleadings, legal outline, for lawyers so they can do Olmstead cases, and our focus is legal services organizations, protection and advocacy organizations, that do this work every single day. But it’s also for lawyers across the country to make sure that anyone who is either at risk of going into an institution or who is in an institution can live in the community. So I hope everyone will come to Olmsteadrights.org, the other thing we have in it is a history videos, we have the oral argument from the Supreme Court case, we’ve got a lot of resources so people can really come to understand the Olmstead case and how it’s transforming the country but how much further we have to go.

Tracey: Our guest is Talley Wells, director of the Disability Integration Project at the Atlanta Legal Aid Society, thank you for joining us.

Talley: Thank you.

Rebecca: Next up, we’re gonna play some remarks for a recent event hosted by the Vera Institute, on the intersection of criminal justice and disability. And specifically, we’re gonna play some remarks from TL Lewis, the founder of an organization called HEARD, Helping Educate to Advance the Rights of the Deaf.

TL: I begin every discussion that I give, that I present, by centering the space, and that means uplifting the names of people who are no longer with us, making sure that we all recognize that we’re not talking about numbers, we’re not talking about statistics, but what we’re talking about are human lives. So I will begin today, like I begin every other day, not with scanning the building upon which we all sit, or stand. Tanesha Anderson, Freddie Gray, Anthony Hill, Ezell Ford – these are African American people with disabilities whose lives were cut short by law enforcement. News media and advocates alike erase parts of their identities; they often mention that they are black people who have been murdered by police officers, but what they don’t often mention is that these are people with multiple marginalized identities, and those marginalized identities all together are what led to their untimely murders. Their lives mattered. Their black lives mattered. Their disabled black lives mattered. And that’s important for us to be able to state in this space. Today, I want to propose to you all something that some people might call lofty, others might call revolutionary- others might say it’s impossible. But before I begin, I want to remind you that those same words were used with advocates like the Honorable Senator Harkin as related to the ADA 25, 30 years ago when it was conceived of. So I want you all to dream with me for a while. Let’s explore what’s possible, and not worry about what exists now. Let’s think outside of the box, outside of the realm. So that’s what I’m challenging us to do today. So stay with me. So here’s what I propose: I’m proposing an end to police brutality and mass incarceration by engaging in intersectional disability justice advocacy that – because of its historic and present work related to deinstitutionalization and creative community-based solutions – is already steeped in creative – creative and innovative, transformative deinstitutionalization policies and practices. And at its core, that’s what mass incarceration is – it is institutionalization, and it’s important to name that as well. So here are the statistics and information that provide a framework for my proposal. I’m just gonna run down some brief statistics that are available online. Children with disabilities are three times more likely to be placed in foster care than those without disabilities. Children with disabilities are four times more likely to be living in poverty than those without disabilities. 65% of boys and 75% of girls in juvenile detention have mental illnesses. Children with disabilities are 50% more likely to drop out of school than those without disabilities. Black children represent 18% of the preschool enrollment population but 48% of those preschoolers – preschoolers, yes – were receiving more than one out of school suspension. The larger question, of course, is why are we suspending preschoolers, but the second is, okay let’s talk about racial disparity and disability disparity in those – in those numbers. Children with disabilities enter the juvenile system at 5 to 6 times the rate of youth who do not have disabilities. Up to 85% of children in juvenile detention have at least one disability – and of that 85%, only 30-some-odd percent of them are receiving access to services in their schools pursuant to IDDA which Dara mentioned earlier. 60% unemployment rate which was mentioned by the Honorable retired Senator, and disproportionately underemployed or not employed within the deaf and disabled communities. So, those are the kind of key statistics that should paint the- the- the broad strokes and these last three are super critical, so stay with me. The largest mental health providers in the nation are jails – Cook County in Chicago; Riker’s Island in New York; and LA county jails. Blacks and Latinos make up 30% of the US population, 60% of the incarcerated population, and now 20% of our population here in the United States, of course, has disabilities. We represent 20% of the population that is in the United States. We represent – studies have shown – 60-80% of those who are incarcerated in jails and prisons across the nation. So at the end of the day what that means is people with disabilities are the largest minority population in jails and prisons. Period. If ever there was a crisis of institutionalization with people with disabilities, that crisis is now. It’s impossible to address the issues of mass incarceration without addressing it with a disability and deaf justice lens.

While many have begun the important discussions surrounding the harms visited upon so many communities of color and different communities, religious affilitations and so on and so forth – our native nations. There’s been, you know, a very – a vast chasm of discussion about disability. And there is absolutely right – those discussions that do center on disability and criminal justice tend to focus on very specific portion of people with disabilities to the detriment of other disability communities which is highly problematic. (26:13) For example, I’m gonna skip some stuff because I can come back to it later for example people who are deaf, diabetic, epileptic, you mentioned these things, have actually been murdered by police officers, because people don’t have intellectual disabilities, don’t have mental health conditions, are not experiencing crises, but have physical conditions that render them, because the police officers are not utilizing the ADA, mitigating, or taking time to stop before they resort to lethal violence against our community members, literally are being murdered because they have a disability, so we have to state in this space, and our jails and prisons are literally overflowing with people with disabilities, out in California and many other states. We’ve had judges actually ruling we need to de-incarcerate specific prisons because they are literally overflowing with folks, so that’s kind of the large lay of the land and despite this long standing federal disability rights laws that we all know of and love and cherish- the ADA, the rehabilitation act- which so many people before us spent so much of their lives invested- their hearts, invested- in creating these laws, what we have to acknowledge is that laws alone do not create, we cannot legislate social, cultural, and organizational and agency change. We have to take further action, and that’s kind of where we are today, and I’ll give you some “for instances” right? So, for instance, although it’s rarely discussed deaf people and people with disabilities are often wrongfully convicted because of lack of access to police officers, attorneys in the courts, then once they’re institutionalized they’re physically and sexually assaulted and subjected to depressing isolation and other forms of exploitation. I’ve worked for a decade on more than fifteen death wrongful conviction cases. The majority of these cases have uncanny similarities, in at least two respects- there are many others but I’ll name two- private police departments fail to provide reasonable accommodations in terms of communication. Detectives, attorneys, and judges alike- the entire system is guilty. Let’s be clear. We’re not blaming police, we’re not blaming just- the entire system is ableist and audist and we need to name that in this case. Ableism is discrimination based on your ability; audism is discrimination based on your ability to speak or hear, um, as opposed to sign and listen with your eyes or listen with your hands if you’re a tactile sign language user. We can’t prioritize certain kinds of abilities over other abilities and that’s really important also to name. Similarly, deaf, deaf blind, deaf disabled, and hard of hearing prisoners customarily experience discrimination and terrible abuse in our prisons, punished for failure to obey commands that they can’t hear, using sign language to communicate, for failure to follow rules that were never conveyed, for missing counts that they were never aware of, for filing grievances about these persistent inequities, they’re denied interpreter services, deprived of access to medical and mental health care services in the prisons, denied access to education and reentry programs, cut off from access to the most basic human interaction, all of this coupled with inaccessible telephone systems in the prisons, which I will get to momentarily. I recently submitted, testimony to the Senate, they had us- their second ever hearing on solitary confinement and I shared with the Senate and the world- hopefully folks are actually reading our testimony- that the solitary- the use of solitary confinement against people who are deaf and people with physically disabilities is- let’s be clear- solitary confinement is torture for anyone, period. It should not be used against anyone in any elongated way and I would argue it shouldn’t be used at all but that’s a whole other revolutionary idea that’s not the point of discussion today. But what we do know is that we have deaf people who within weeks, sometimes hours and often in months, literally try to kill themselves as a result of the deprivation that happens, while they are experiencing solitary confinement at the hands of our government. That is in our name. We are responsible for that. There’s a large discussion about solitary and people with mental health. Where’s the discussion about solitary and people with other disabilities? And our children, we- the ACLU did a wonderful job of recently bringing, shedding light on the issue of putting our babies in boxes in solitary confinement and what that does to them mentally and otherwise but there is not a discussion about physical disabilities and solitary confinement. We should be fighting for all of us at once, not one thing at a time, not only mental health but not deaf. There is no reason a deaf person or any person with any other disability, which is the vast majority of our prison population, should be in solitary confinement. And that’s what we need to be saying as advocates, not “let’s not put people with mental illness in pri-, in solitary.” So, I’m gonna hold on that because I’ve got more I wanna share, alright. Finally, despite the existence of these wonderful laws which we all support and uphold, will soon we, my organization -an all-volunteer non-profit organization- will soon be on our fourth year of advocacy just to get telephones for people who have communication disabilities in prisons across the nation. As of last month, eight prisons across this nation had videophones. Eight. That means for decades countless deaf people, deaf, deaf blind, deaf disabled, hard of hearing, have had no access to their loved ones, their babies, their families, their attorneys. And we know that people who are deaf actually experience the least access to the justice system in the first instance, so why don’t we make sure that they can at least communicate effectively once they’re in the jails or prisons across the nation? This is the kind of advocacy we need to see from folks. So right now we’ve got criminal justice reform and prison advocates who are really finding ways to drastically decrease mass incarceration. They’re proposing things like capping sentences, legalizing certain drugs, etc., etc., alternative courts, what I’m proposing, is that this, the situation of mass incarceration is, has grown way too large and that those things are not going to work; we will still end up, even if we were to release all of those people in these proposals, with mass incarceration levels above what we had in the 1980s. So what I would like us to do is to think about a justice system that- what would it look if we applied disability justice principles, right? And so here’s my alliteration of the day, and this is what you should take home with you. Our justice system could decriminalize disability, deescalate law enforcement situations for people in crisis, divert all people with disabilities away from jails and prisons, demand disaggregated data collection on disability in jails and prisons, deinstitutionalize those of us who are presently trapped in the clutch of the system because society has failed for so many decades to provide meaningful support and accommodations for people with disabilities in the first place. Many people who are presently incarcerated, um, are incarcerated now for behaviors that forty years ago would have landed them in a psychiatric facility. That’s important to state. We have to start re-envisioning and reimagining criminal justice. Criminal, what is criminal? Right, because criminality is a social construct, and what is justice? And what could that look like if we actually applied a racial justice, a trans justice, a disability justice lens? I think that that is the way we can advance the rights of all of us and we really need to recommit ourselves to the long and bitter struggle for justice as the honorable Senator mentioned, so thank you.

Rebecca: This is TalkPoverty Radio on the WeAct Radio network. I’m Rebecca Vallas, and for a very special episode commemorating the 25^th anniversary of the Americans with Disabilities Act, or the ADA, I have with me Alice Wong. She is the founder and the coordinator of the Disability Visibility Project, which was done in partnership with StoryCorps. Alice, thank you so much for joining TalkPoverty Radio.

Alice: Thank you so much for having me.

Rebecca: So I understand that you and I were both at the White House event commemorating the 25^th anniversary of the ADA. I didn’t see you, but I understand now that you were there in a special way.

Alice: There’s a really awesome device, called BeamPro, and it’s basically a teleconferencing device that allows a person to use their left hand at home and they can operate a robot. So it’s kind of like people can see me through the monitor, and I’m moving around in the Red Room and the Blue Room and the East Room. I couldn’t believe it. It was thrilling to be in the White House, and to actually say hello the President.

Rebecca: So, you – you were the first person to ever use this BeamPro technology in the White House. Is that right?

Alice: I believe so. That’s what they told me at the White House. So it was a huge honor, and really – you know- an adventure to try to use it and to make sure it all worked. Kind of sort of similar of the President and me side by side, virtually.

Rebecca: It’s pretty amazing.

Alice: Well, this is life in 2015, now. I think there’s a lot of amazing interest in technology and things that are available online now that really give people with disabilities a way to participate in ways that they haven’t before, and one thing that I maybe should I mention: so many amazing people with disabilities using Twitter and Facebook, makes me think about when I was younger – in the pre-Internet days – and, wow, if I had that as an option, the world would be so different.

Rebecca: Well, in full disclosure to our audience: that’s how you and I know each other is through Twitter.

Alice: Yeah, it’s pretty funny.

Rebecca: So, tell us a little bit about the Disability Visibility Project you coordinate in partnership with StoryCorps? What is that project about and how did it come into being?

Alice: The Disability Visibility Project is kind of like a grassroots campaign that I launched last year, and it’s kind of a one year project, kind of encouraging people with disabilities to stand a part of this lead up to the really landmark 25^th anniversary of this Americans with Disabilities Act. There aren’t enough stories – people with disabilities telling their stories on their own terms, and it’s kind of an easy way to really get the community involved. And Storycorps is a wonderful national nonprofit located in Atlanta, Chicago, and San Francisco, and they have a mobile tour that goes throughout the country. And we’re just trying to encourage people from all over the country to try to participate and just tell the stories of their lives and what they care about. And now with the StoryCorps app, people don’t have to travel. They can just use their smartphone and record their story. There are a lot of different ways.

Rebecca: And tell us about a few of those stories that you received through the Disability Visibility Project. I think you have some actually for us on tape that we’ll be able to play for our listeners.

Alice: A lot of people talked about education in their career lives. And one thing that has been clear that – in some of the interviews, is the notion of economic self-sufficiency. People who grow up having a disability – how they need to take care of themselves. And what they need to do in order to take care of themselves. In many ways, they need education, earning money, working hard, and sometimes, there are a lot of policy areas that come along with that, so that’s been in some interviews so far.

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Rebecca: And let’s play a clip of one of those interviews.

Speaker: If you don’t have a disability, you know, you basically are encouraged to always present yourself in terms of what you can do, that’s your identity- hopefully, if you have a healthy sense of self. The things that you can’t do are simply the things you haven’t learned how to do yet, or that you didn’t really care about in the first place. I feel like the message that a person with a disability gets is: your identity is based on what you’re unable to do. It’s how well you can argue for not being able to do something.

Rebecca: Alice, now I understand that several of the interviews you did for this project were on the subject of people with disabilities fighting for economic justice. Let’s hear a clip from one of them.

Speaker2: Well, and I think the next frontier – and I know there are people working on this, and talking about it, so it’s like some nuanced idea – it’s really economic justice for people with disabilities. I mean, we are among the poorest of the poor in this country, the most unemployed or underemployed demographic. And you know I think economic justice is really the next fight – and it’s the fight now, right, and it’s the fight in the future.

Rebecca: Something we talk a lot about on TalkPoverty radio is how disability is both a cause and a consequence of poverty. What are some of the ways in which we need to see policy change building on the successes of the Americans with Disabilities Act and other pieces of critical legislation to really move forward and realize the goals of those pieces of legislation?

Alice: One of the easiest things in my mind – and easy in my mind, but really difficult, I think, politically is really the asset and income limitation for people with disabilities to receive either SSDI or Medicaid. For so many people with disabilities, these are major disincentives towards working. Whether or not they have the drive, the talent, and the opportunity to work, these kind of barriers really keep people with disabilities who want to work, who want to pay taxes, earn income, and actually create access and wealth and contribute to society and it’s punitive for many of us, in modern community-based services, because there are linked with Medicaid, and all of these aspects, income limitations, are really hampering a lot of disabilities – younger people, who want to work, are wanting to enter the workforce, but cannot.

Rebecca: And where can our listeners find more about the Disability Visibility Project?

Alice: We have a website called disabilityvisability.com. We also have a Twitter, at D-i-s-v-i-s-i-b-i-l-i-t-y.

Rebecca: It’s a doozy to spell. Well, thank you so much Alice Wong for being on TalkPoverty radio today. This has been – this is a really special episode for me in a lot of ways and I’m really glad you were able to join us for it. Alice Wong is the project coordinator for the Disability Visibility Project, a community partnership with StoryCorps.

Alice: Thank you so much Rebecca.

Rebecca: You’re listening to TalkPoverty radio. I’m Rebecca Vallas. And to continue this special ADA-at-25 episode of TalkPoverty Radio, I have a very special guest with me – Michael Morris. He is the executive director of the National Disability Institute. Michael, thank you so much for joining the program.

Michael: Thank you for bringing me on and I look forward to the conversation.

Rebecca: Well this is obviously a wonderful and celebratory week, but a point that you and other people have made is that we really still have a lot of our work cut out for us. For example, one tragic sentence that I write and say routinely is that “disability and poverty go hand in hand.” And this is something you and I have discussed at length over the years- that 25 years after the ADA, this is still the case. Why is this still the case?

Michael: I think there’s no single reason. I think attitudes change slowly. I think that there’s discrimination in this country still that prevents many people with disabilities from being employed. The estimates vary of anywhere from 50-80% of the disability population is not in the labor force. We know people with disabilities are two times more likely to be living in poverty than their non-disabled peers. But I think the real issues that confront us is a combination of policy and practice.

Rebecca: And, going back to the poverty rates of people with disabilities even who are working, something that is perhaps less well known but really is quite staggering is that poverty rates are disproportionate for people with disabilities even when you compare part-time workers and full-time workers with and without disabilities. Maybe part of this is about the disability pay gap – we’ve got new research finding that for workers without disabilities who are paid a dollar, workers with disabilities are paid just .68c on that dollar. Do you think that maybe these – how do you explain these disparities?

Michael: Well, it’s so interesting. That’s really some new research which compounds the challenges people with disabilities face. So those who have been fortunate enough to get into the workforce find their pay gap than women, racial and ethnic minorities. So, what does all that mean? It means that, culturally, we have a long way to go for people with disabilities to truly be accepted for their talent, for their value, for their contributions to communities, to the workplace, and to our economy.

Rebecca: Now, switching gears a little bit, it’s not just a story all about income poverty disparities. The National Disability Institute, which you lead, has also looked at how people with disabilities are doing when it comes to having savings – even just a little bit of savings. What have you found there?

Michael: Yes. We’ve been able to analyze data from several major studies- one by Finra, one from FDIC- surveying households. And here again we see some stark contrasts. When people with disabilities were asked do they have enough funds for any kind of financial emergency – car breaks down, could be a healthcare emergency – people with disabilities were 2 to 3 times more likely not to have any rainy day fund, any emergency fund. So, it’s more than the income gap. It’s this lack of savings. And, we investigated further and see that 80% of people with disabilities have no retirement account, have not ever seen a person to talk about any financial planning. So, we really are at a point in time, that I would have expected when – frankly, I was there at the White House, back on the lawn, with about a thousand others, when President Bush signed the ADA, and I don’t know if I could have seen the future 25 years later, but my expectations- and I think so many people in the disability community, their expectations as well – that promise of the ADA, in addition to promoting independent living and community participation, was also about advancing economic self-sufficiency. We’ve got a long way to go.

Rebecca: And it isn’t just retirement accounts, right? Some of the work you guys have done has also found that almost half of households headed by working-age people with disabilities are either unbanked – have no bank at all, no mainstream financial inclusion – or underbanked. Can you talk a little bit about that?

Michael: Yes, that information came from the new study we did with FDIC that almost 1 in 2 individuals with disabilities heading households were either unbanked or underbanked – and if that isn’t a serious problem enough by itself, the secondary problem was people with disabilities as compared to people without disabilities were more likely to use alternative financial services- kind of a fancy name for pawn shops, and check cashing places, predatory lending operations, that – on top of – let’s kind of add up the pieces here. If you’re working, you’re probably earning less on the dollar from new research. You’re also not in the financial mainstream. You’re also using alternative financial services. And you’re less likely to be planning for the future in terms of retirement, or down the road – even to have emergency funds. So if there’s anything that I would stress to people thinking about “well, we’re at 25 years, where do we go?” I think the compass couldn’t be pointed more directly than on this issue of poverty and disability. It’s unacceptable and we know we can do better.

Rebecca: So what can we do to increase the numbers of people with disabilities who are included in that financial mainstream?

Michael: Well, we’re working with 19 community partners in 6 cities in a project called “Roads to Financial Independence,” where we’re providing on a 1-to-1 basis opportunities for financial education and financial coaching to individuals with disabilities who want to return to the workplace, or get into the workplace for the first time, are already working- is help them assess their financial capability and status, set financial goals, and look at – if they have no credit, how do you establish credit; if they’re heavily in debt, how do we help them reduce debt; how do we help them establish a savings account? We do expect, over the next several years, to be working with several thousand individuals with disabilities, and learn – really, for the first time – how can the financial world and the disability world and all kinds of community partners, work really well together and what kind of results can we then achieve?

Rebecca: And in your TalkPoverty column this week, you mention that there are a number of recent policy developments that offer concrete opportunities to help bring people with disabilities into the financial mainstream. And specifically, you mention the ABLE Act, legislation that was passed last year. Can you tell us a little bit about the ABLE Act – what it does, and maybe if there are ways in which you don’t think it goes far enough?

Michael: Sure. ABLE Act is, to me, a historic piece of legislation. Took 8 years to get through Congress, and basically it sets up for a certain number of people, who will be eligible – people with disabilities – to establish tax-advantaged savings accounts. It’s somewhat modeled after the 529 college savings accounts, but with several important differences. Number one: the use of the money in the account is not limited just to paying college tuition, and housing, and books. It covers the range of needs that people with disabilities face, often as an extra cost of just living a better quality of life, that’s related to transportation, employment, education, purchase of technology, extra healthcare costs. So it really covers a lot of ground to change a person’s outlook on what they can do. But it even does more than that. It allows, for the first time, for people on SSI to get past the asset limit we talked about a few minutes ago – of $2000 for an individual, $3000 for a couple. No federal public benefit that is means or resource-tested will be able to count the ABLE account that would disqualify someone from being any longer eligible for that public benefit. So in those several ways, this is really a historic change in thinking. Now, unfortunately, it is limited to only a segment of the disability community. It will only help people whose age of onset of disability was age 26 or younger- that leaves out millions of people – and it also restricts the amount of money you could put aside in a savings account annually to $14,000. Now, over time one is going to accumulate more money, but this is so important because, to me, it also is the first time in public policy where Congress is recognizing, “wait a minute. People with disabilities have extra costs other people don’t have.” Sometimes just to get out of bed with personal assistance services. Sometimes it’s technology which will help them speak, or read. Sometimes it’s other assistance related to employment, or transportation. These are costs that could be covered as part of the money set aside in ABLE account. So it’s pretty significant, and I think – I hope – we’ll continue to be able to build on it, expand the population who’s eligible. But, more than that, I really see over the next 5 years, a potential 5 million ABLE accounts opened across the country. What’s exciting about that to me is it sets up a culture of savings, which we didn’t have. It takes away the fear of losing public benefits because those asset limits related to an ABLE account, an ABLE account will be excluded. It really allows a person to dream, and I consider an ABLE account as almost a down payment of really – a first step toward freedom, and independence.

Rebecca: And another policy you mention in your TalkPoverty column relates to the Earned Income Tax Credit, or the EITC. What is it that you think should be done with the EITC, and why is important for people with disabilities?

Michael: Well, EITC -I know, Rebecca, you know- is for people with and without disabilities. It has lifted millions of people out of poverty. For people with disabilities, many of them are unaware they may even be eligible. There’s a lot of myths and misinformation about Earned Income Tax Credit. During the past ten years, National Disability Institute has worked collaboratively with the IRS to do outreach and education to the disability community that: you do not have to be a family, you do not have to have a family with children, to be eligible for the Earned Income Tax Credit. We have helped, over the past 10 years, 10 million low-income taxpayers with disabilities actually be helped with their tax return, and have recouped over $2 billion in tax refunds. But what we do know is the Earned Income Tax Credit could be even better. Right now, you have to be age 25 or older to be eligible. And it really – this is something, unusually, both at the Republican and Democratic sides – or spectrum – of ideology, there is agreement to bring down the Earned Income Tax Credit to a much lower age – 18, 19, 20. We also know the benefit is skewed towards families with children, and so an individual, which represents lots of folks with disabilities who are not part of a family – they’re getting a much lower credit or benefit. We had one of the key people of the IRS at our summit last week, who shared a very interesting statistic: despite our work with helping people with disabilities access the Earned Income Tax Credit, there are still 1.5 million individuals with disabilities who are eligible for the credit but have not realized that what they have to do is file a tax return. So we’ve got a way to go, but the EITC is an important tool. I think we’ve proven it to be, that is helping thousands of people in the disability community, and millions of low-income Americans really finally escape poverty.

Rebecca: Michael Morris, executive director of the National Disability Institute. Where can our listeners find more about the reports that you guys have done, and the other resources that you have?

Michael: Thank you for asking. We have a website that we hope will be easy to remember. “www.realeconomicimpact.org” And we urge people as well to join our Real Economic Impact Network.

Rebecca: Michael Morris, thank you so much for joining TalkPoverty radio.

Michael: Thank you, Rebecca.

Rebecca: And that’s our show. Thanks for listening to TalkPoverty radio on the WeAct radio network. We’ll be back next week, Thursday at 4. Also available on iTunes as a podcast or you can listen online at weactradio.com. Special thanks to our executive producers Alyssa Peterson and the one and only Greg Kaufmann, CAP’s amazing poverty and press teams-

Tracey: -and, as always, DC’s own Christlyez Bacon gets the last word. Thanks for listening.

Christlyez: [raps] I work and get paid like minimum wage, sites to hit the clock by the end of the day, hot from downtown until the hood where I stay, the only place I can afford cuz my block ain’t safe. I spend most of my time working trying to bring in the dough, and none of those could come at me with a HMO, and nowadays it’s common for grandparents to outlive their grandkids, and those the type of odds that we handlin’. I’m not a slave to a man with a whip, I’m a slave to the U.S. mint, and it got me doing things in my life that never made any sense, but it paid me in dollars and cents. I need the money for the food and healthcare, the schools and bus fare, you can’t pay the rent without the U.S. right there, with shackles on my hands and toes – they got a brotha moving slow but my soul is determined to go. I want freedom. Freedom. Now I don’t know where it’s at, but it’s calling me back. I feel my spirit is revealing amount. We just tryna get freedom. Freedom.

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.

To discuss how far we’ve come—and how far we still have to go—we’re joined by Talley Wells, Director of the Disability Integration Project at the Atlanta Legal Aid Society, for an overview of the ADA as well as the Supreme Court’s Olmstead decision, a critical civil rights case for people with disabilities. Courtesy of the Vera Institute, we feature remarks from Talila “TL” Lewis, founder of HEARD, on the impact of the criminal justice system on people with disabilities. We also hear from Alice Wong about the Disability Visibility Project, a partnership with StoryCorps to collect oral histories of people with disabilities. And we are joined by Michael Morris, Executive Director of the National Disability Institute, to discuss the work that lies ahead to ensure that disability and poverty no longer go hand in hand.

Here are 7 moments from this week’s episode reflecting on the ADA:

1.  “[Olmstead] is the most important civil rights decision for people with disabilities. It’s often called the Brown v. Board of Education decision for people with disabilities.”

2. “When the laws changed and society changed, [Kate Gainer] had the right to get in the front of the bus, but it wasn’t until much later – and the push from the disability rights movement – that she was actually able to get on the bus because she uses a wheelchair.”

3. “Tanisha Anderson, Freddie Gray, Anthony Hill, Ezell Ford. These are African American people with disabilities whose lives were cut short by law enforcement.”

4. “People with disabilities are the largest minority populations in jails and prisons.”

5. “Deaf-blind, deaf-disabled, and hard of hearing prisoners customarily experience discrimination and terrible abuse in our prisons. Punished for failure to obey commands they cannot hear.”

6. “I couldn’t believe it. It was thrilling to be in the White House and to actually say hello to the President.”

President Obama talks w Alice Wong via robot before ADA reception today. pic.twitter.com/W7BMEwWX9B

— petesouza (@petesouza) July 21, 2015

7. “There’s a disability pay gap: For every dollar earned by workers without disabilities, those with disabilities earn just 68 cents.”

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Over the last 50 years, the battle for inclusion has been a main plot of our American story.  It is a battle we are winning, and  one that we are losing.  It deepens our pride and sometimes our prejudice.  Although often overshadowed, the disability community has been at the center of this struggle for inclusion and our evolving understanding of what inclusion means.

We have seen the push and pull toward inclusion erupt in many forms over the past few weeks.  Most recently, the Supreme Court affirmed both a critical tool in the Fair Housing Act and the right to gay marriage. Yet, we also saw abhorrent acts of violence based on race.  And yet… we saw an Indian American Governor and two Senators (one white and one black) lead South Carolina in taking down its Confederate Flag.  And yet…

In the midst of these skirmishes, people with disabilities celebrate two of the greatest victories for inclusion in our country’s history: Olmstead v. LC (1999) and the Americans with Disabilities Act (1990). These landmark events are related.

Olmstead, an Atlanta Legal Aid Society case, is often called the “Brown v. Board decision” for people with disabilities. The Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” It ordered the state of Georgia to assist two women with disabilities so they could live in their own homes rather than continuing to confine them to a hospital for people with similar disabilities. Olmstead is slowly transforming our country from a 19^th century system of institutions, isolation, and dependence, to a 21^st century nation of inclusion, opportunity, and independence.  And yet… amidst the celebration, we recognize that thousands with disabilities still languish on waiting lists, in institutions, and without jobs – waiting for the promise of inclusion to materialize.

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On July 26^th, we marked the 25^th anniversary of the Americans with Disabilities Act (ADA). While today we take it for granted, the passage of the ADA was an arduous struggle.  It is best symbolized by Tom Olin’s photograph of men and women with disabilities leaving their wheelchairs and pushing their way up the steps of the Capitol. In signing the act, President George H.W. Bush declared that the ADA would ensure people with disabilities “the opportunity to blend fully and equally into the rich mosaic of the American mainstream.”

Even though the ADA created legal requirements to enable inclusion and stop discrimination, people with disabilities are often still segregated into institutions and excluded. Civil legal aid providers, including those in the national Protection & Advocacy system, play a critical role in ensuring fair treatment of people with disabilities; but the available resources are insufficient to meet the need.  These organizations advocate for accessible and integrated education, employment, housing, and healthcare for people with disabilities of all ages.  In many states, men and women with disabilities – many of whom live with aging parents – need the help of legal advocates in order to obtain the supports.  Without such help, they may be forced to join others like them who already languish in institutions.

In Georgia, the past five years have shown both the promise of Olmstead and the enormous work that remains.  The United States Department of Justice – in collaboration with the Atlanta Legal Aid Society, the Georgia Advocacy Office, the Bazelon Center for Mental Health Law, and other mental health advocates – reached a settlement to close the state’s psychiatric hospitals and provide an array of supports, including housing, to thousands of Georgians with severe and persistent mental illness.  The state also promised to transition everyone with developmental disabilities from the state hospitals to the community, and to provide limited services to people with developmental disabilities in the community.

Due to the settlement, Georgia has invested more than $170 million in new dollars into these systems with mixed success.  A range of new services are enabling people with mental illness to live meaningful lives in the community.  The state is providing 2,300 new state housing vouchers similar to Section 8 and has adopted a housing first policy that ensures permanent stable housing as a first step before services are initiated.  On the developmental disability side, the state has realized its infrastructure of services is broken and has placed a moratorium on transitions.  The Justice Department and Georgia are negotiating an extension of that part of the settlement.

There is still more to do on Olmstead.  The Atlanta Legal Aid Society will continue to advocate for Georgians in nursing homes who want to be in the community and will push the state to address the 7,900 person waiting list for developmental disability services – a list that includes 2,890 people waiting years for services despite the fact that the state has determined that they need services within six months.

This is just Georgia.  Olmstead cases are being brought to courts across the country.  Civil legal aid attorneys now have new tools to bring these cases with pleadings and a legal outline on the new OlmsteadRights.org website, developed by the Atlanta Legal Aid Society in partnership with the National Disability Rights Network.  The website also shares the history of Olmstead, provides tools for people to advocate for themselves, and tells the stories of men and women whose lives have been transformed by Olmstead.

In the years since Olmstead and the passage of the ADA, we as a country have engaged in the difficult and revolutionary work of real inclusion.  We have wrestled with what actions governments, businesses, and each of us must take to accommodate our fellow citizens who use wheelchairs and who have sight and hearing impairments.  We have brought students who learn differently into our regular classes.  And we have helped people return to their own homes who thought they would die in nursing facilities.

Along the way, we have learned the value of inclusion.  Ramps assist people with disabilities, and also aging family members, parents with strollers, and, of course, our rolling suitcases.  Assistive technology, smart phones, and computers have made life easier and more efficient for everyone – not just people with disabilities. And our workplaces, classrooms and communities benefit from the participation and contributions of people who formerly would have been unnecessarily locked away in institutions.

In our rapidly diversifying nation, the battle over inclusion will continue in politics, the courtroom, and our local neighborhoods.  The nation should continue to look to our extraordinary disability community for how to do inclusion well.  And yet… our nation must also recognize how far we have to go.

– 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.

This commonsense step is called reallocation, a simple budgetary fix that temporarily changes the share of the payroll tax dedicated to each of the Social Security trust funds—the retirement fund and the disability fund. It’s a common procedure that has helped the Social Security programs deal with temporary shortfalls in both funds 11 times in the past. The current shortfall to Disability Insurance was long-anticipated—a result of changing demographics which include aging baby boomers and women entering the workforce in greater numbers in the 70s and 80s.

Reallocation offers a sure fix that has worked time and again. That’s why leading aging and disability organizations all strongly oppose the new rule – including AARP, the National Committee to Preserve Social Security and Medicare, Social Security Works, NOSSCR (of which I am the Executive Director) and more. A group of Senators immediately responded by sending a letter to Senate Majority Leader Mitch McConnell, urging him to “forcibly reject” the House Republican rule.

 “Holding hostage the Social Security benefits of any American, particularly those of the 9 million Americans with disabilities who are at risk in the coming years, is an untenable proposition.”

The truth is that this Congressional politicking comes at the expense of the millions of Americans who rely on the Social Security Disability program, established over half a century ago to serve as a vital lifeline for those with serious illnesses and disabilities.

One recent story from a beneficiary illustrates clearly how people will be affected if automatic benefit cuts kick in as a result of the House rule. Abby (name changed) was diagnosed with Type I diabetes and started requiring insulin when she was 15 years-old. Even with her health challenges, she graduated from high school and had a successful, decades-long secretarial career.

Although Abby stayed very fit, paid close attention to her diet and managed the disease for 40 years, diabetes began to interfere with her ability to work due to the onset of new complications, including episodes of extreme confusion and passing out due to hypoglycemia. As a result, Abby was no longer able to work and consequently lost her medical insurance. Despite repeated attempts to return to work, she was unable to keep her blood sugar under control.

Abby initially filed for Social Security coverage and was denied. While her case was pending, she had many more blackout episodes and made the hard decision to stop driving for safety reasons. She did not have enough money to pay for a specialist who could get her symptoms under control. She feared passing out in public and having to pay for an ambulance, so she rarely left her home. She passed out on a regular basis, waking up with no recollection of what happened or how long she’d been out.

After two years of waiting, Abby had her Social Security hearing, and, with the help of an experienced Social Security Disability attorney, she was approved for coverage. This life changing decision means that she can now get health coverage, allowing her to see a diabetic specialist. And, she can afford an insulin pump and other supplies she needs on a daily basis.

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Abby worked and paid into the Social Security system for decades, and tried to keep working for as long as she could. Her story is one of millions, and shows why we need to protect the program from harmful cuts and politically motivated changes.

Congress needs to enhance and strengthen this vital program for the 11 million individuals who rely on it to help keep them out of poverty. In addition to reallocating money from the retirement and survivors’ trust fund, Congress also needs to fully fund the Social Security Administration. This will alleviate backlogs in processing claims and ensure sufficient funding for program integrity work. People like Abby shouldn’t have to wait two years for basic healthcare.

Social Security has been a hallmark of our nation’s social infrastructure for decades, and its values go well beyond dollars and cents. The program strengthens economic security and dignity for all Americans. It also provides a boost to local economies across the country. We’re calling on the new Congress to take action to preserve and fortify the program – for current and future generations – not by partisan politicking, but through sensible, commonsense reforms to support the American people. Consideration of any changes to this vital system must include the voices and views of people with disabilities as well as all Americans who may need Disability Insurance in the future.

Congress hasn’t been back even two weeks, and the conservative attacks on Social Security are already in full swing. As ThinkProgress reported last week, House conservatives kicked off the 114^th Congress—literally on Day One—with a midnight rule change that prohibits a routine rebalancing of the Social Security trust funds, effectively manufacturing a crisis and putting millions of Social Security beneficiaries at risk of needless benefit cuts.

The plot thickened further yesterday when Senator Rand Paul (R-KY) took aim at beneficiaries of Social Security Disability Insurance with a series of incredibly offensive remarks at a private meeting with legislative leaders in Manchester, NH. In a situation resembling Mitt Romney’s famous remarks about the “47 percent,” Senator Paul’s comments were caught on tape by American Bridge, a left-leaning PAC that conducts opposition research to aid progressive candidates:

If you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half the people on disability are either anxious or their back hurts. Join the club. Who doesn’t get up a little anxious for work every day and their back hurts? Everyone over 40 has a back pain.

Senator Paul is just the latest conservative member of Congress to mock disabled workers for whom Social Security is a vital lifeline. But particularly coming on the heels of the dangerous rule change, the Senator’s remarks serve as a worrisome harbinger of what we can expect from conservatives in Congress in the coming weeks and months. So let’s get a few things straight. As Shawn Fremstad and I have written for the Center for American Progress, and in numerous outlets such as ThinkProgress, National Journal, and others:

The Social Security disability standard is among the strictest in the developed world—and most applications are denied. According to the OECD, the U.S. disability benefit system is the most restrictive and least generous of all member countries, except for Korea. Fewer than four in ten applicants are approved, even after all stages of appeal. Beneficiaries have severe impairments and illnesses like cancers, congestive heart failure, kidney failure, multiple sclerosis, emphysema, and severe mental illness. Many have multiple impairments. Medical evidence is the cornerstone of the disability determination process, and in most cases, medical evidence from multiple medical professionals is required to establish eligibility.

Social Security Disability Insurance is coverage that workers earn. To be insured for benefits, an individual must have worked and paid into the system. Both workers and employers pay for Social Security through payroll tax contributions. Workers currently pay 6.2 percent of the first $118,500 of their earnings each year, and employers pay the same amount up to the same cap. Of that 6.2 percent, 5.3 percent currently goes to the Old Age and Survivors Insurance, or OASI, trust fund, and 0.9 percent to the Disability Insurance trust fund.

Few beneficiaries are able to work. According to data from just before the onset of the recent economic downturn, some 16.9 percent of disability beneficiaries worked at some point during the year. Of those who worked, fewer than 3 percent earned more than $10,000 during the year – hardly enough to live on. This comes as no surprise given that many beneficiaries are very sick, or even terminally ill – one in five male and one in six female Disability Insurance beneficiaries die within five years of receiving benefits, and beneficiaries are three to five times more likely to die than other people their age. Further underscoring the strictness of the Social Security disability standard, even workers who have been denied Disability Insurance fare extremely poorly in the labor market. A recent study found that among people whose Disability Insurance applications were denied, the vast majority—70 percent to 80 percent—went on to earn less than $1,000 per month. But for those who are able or want to try to return to work, Social Security’s disability programs are designed to encourage work.

Disability benefits are incredibly modest, but vital. Disability Insurance benefits average $1,140 a month, just over the austere federal poverty level for a single person, or about $35 per day. Disability Insurance typically replaces less than half of an individual’s previous earnings. While the program’s benefits are modest, it keeps more than four million people with disabilities out of poverty each year. For 80 percent of beneficiaries, Disability Insurance is their main source of income. For one-third it is their only source of income.

Social Security Disability Insurance provides protection most of us could never afford on the private market. According to the Bureau of Labor Statistics, just one in three private sector workers have access to employer-provided long-term disability insurance, and plans are often less adequate than Social Security. Access is especially limited for low-wage workers—only 7 percent of workers making under $12 an hour have employer-provided plans. In contrast, Social Security Disability Insurance protects more than 9 out of 10 American workers and their families in the event of a life-changing disability or illness that prevents substantial work. A young worker starting a career today has a one-in-three chance of either dying or needing to turn to Disability Insurance before reaching his or her full Social Security retirement age of 67.

As progressives, we don’t let people get away with denying the facts about climate change. It’s long past time to send a message to conservatives that this kind of offensive, fact-free rhetoric about Social Security disability won’t fly either.

Disability is both a cause and consequence of poverty.

It’s critical to note the progress that has been made in the past several decades. The Americans with Disabilities Act, enacted nearly 25 years ago, prohibits discrimination on the basis of disability and guarantees that people with disabilities have “equal opportunity” to participate in American life. The Individuals with Disabilities Education Act (IDEA), enacted the same year, requires that students with disabilities be provided a “free, appropriate public education” just like all other students. The Workforce Innovation and Opportunity Act expands access for people with disabilities to education and training programs, programs for transition-age youth and young adults transitioning to adulthood, vocational rehabilitation, and more.

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