Podcast Episode 13, Disability and Poverty: Breaking the Link (Transcript)

Rebecca: This is TalkPoverty Radio on the WeAct radio network. I’m Rebecca Vallas.

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 25th anniversary of the ADA. It happened just this past weekend. And actually we’ve been celebrating all week long over at 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

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 25th 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 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, 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 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, 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.

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 25th 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 25th 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 25th 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.

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 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?

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.

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. “” 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 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.



The Voting Rights Act at 50

Largely seen as the one of the greatest achievements of the Civil Rights Movement, the Voting Rights Act of 1965 (VRA) enfranchised voters throughout America by outlawing measures taken by states to limit African American participation in the democratic process. It was widely heralded as a colossal victory for communities of color and did more to empower African Americans than perhaps any law since the Fourteenth Amendment. Yet in 2013, the Supreme Court gutted a critical provision of the law, and effectively rendered a significant portion of the act toothless. Now, as we approach the 50th anniversary of the VRA, renewed conservative efforts to limit voting rights demonstrate that we need new laws to guarantee all Americans access to the most fundamental pillar of our democracy.

Historically, the VRA derived much of its power from Section 5, which was often referred to as the heart of the bill. It recognized that racial discrimination interfered with voting rights and varied in severity by state. The section mandated that states with an established history of racial discrimination needed federal approval before they could overhaul their voter registration laws. This “preclearance” was determined by a formula established in Section 4 of the VRA, which Congress voted to renew in 1970, 1975, 1982, and 2006.

This bipartisan consensus changed quite suddenly in 2013. A conservative-led U.S. Supreme Court ruled in a controversial 5-4 decision that Section 4 was obsolete – that “our country has changed” – and repealed the preclearance formula. The ruling effectively dismantled one of the most important protections in the VRA because, without the preclearance formula, Section 5 applied to no states at all.  The New York Times Magazine eloquently summarized the result: “on June 26, 2013, we had less voting rights than we had on August 6, 1965.”

We cannot continue to stifle the voices of people simply because we do not like the way they vote.

Within 24 hours of Section 4’s repeal, several states moved to enact voter identification laws that would intentionally and effectively limit the right to vote. For example, the state of Texas (a preclearance state) passed a law that required Texans to prove their citizen status with a passport or copy of a birth certificate, which can be costly and present increased barriers for lower-income or older Americans to access the ballot. And as predicted, the law did, in fact, lead to decreased voter registration and turnout. Across the board for all races in the state, voter registration dropped between 2010 and 2014, with communities of color seeing a larger decrease than whites. The law was struck down just yesterday by the Fifth Circuit Court of Appeals as racially discriminatory, a decision that will likely be appealed to the U.S Supreme Court.

As such, it should be no surprise that when the Center for American Progress Action Fund released its Health of State Democracies report earlier this summer, the state of Texas received an “F” grade for ballot accessibility (a metric used to identify potential barriers to the voting process for eligible voters). Other preclearance states that have recently passed changes to their voter registration laws include: Alabama, Alaska, Georgia, Louisiana, Mississippi, South Carolina and Virginia. And every single one of these states scored a D+ or worse when it came to ballot accessibility, underscoring the devastating impact of the Supreme Court’s decision.

This right to vote is a cornerstone of our democracy. It is, in fact, the fundamental right that our forefathers considered as they fought a revolution to enshrine it in our Constitution. It is absolutely imperative, therefore, that we seek solutions to expand that right. House Democrats recently did just that. In order to bridge the preclearance gap created by the Supreme Court, they called on Speaker Boehner to advance legislation. Their plan, the Voting Rights Advancement Act of 2015, would only affect states that were found to have violated the VRA within the past 25 years – approximately 13 states. But Speaker Boehner and Republican House leaders have blocked the law from moving forward in the legislative process.

The reason to bolster voting rights here in America has never been clearer. If America is going to live up to its credo as the “leader of the free world,” we must ensure that all Americans are able to vote. We cannot continue to stifle the voices of people simply because we do not like the way they vote. The time to act is now, and we must ensure through legislation and action that all Americans are politically enfranchised.



Hey Fox News: #TalkPoverty in the First Republican Debate

Editor’s Note: This piece kicks off a campaign at where advocates and people struggling to make ends meet will ask 2016 presidential candidates about how they would significantly reduce poverty and inequality in this country. This campaign builds upon The Nation’s #TalkPoverty campaign, which sought to achieve a substantive conversation about poverty in the 2012 elections. We encourage you to ask questions of the candidates and join the conversation using #talkpoverty and #familiesvote.

Millions of American families are working multiple jobs to make ends meet but are still living paycheck to paycheck.

Millions more who are undocumented can’t plan for their futures because they fear la migra (the immigration police) will haul them and their loved ones away at any time.

And still others, who have served often excessive sentences for past transgressions struggle to find work when they are released from prison.

In total, about 106 million people live on the brink, fighting to overcome the barriers to success that keep them living in marginalized communities or in such chaos that financial stability is out of reach.

Yet what are the chances that their struggles will be addressed in any meaningful way during the first Republican presidential debate hosted by Fox News on Thursday?

What are the chances the Fox News moderators will ask candidates about their agenda to address the needs of neighborhoods facing high unemployment and low wages?

What is the likelihood that the candidates will be asked to outline plans to improve the lives of the working families who live in forgotten communities where there is little investment in infrastructure and jobs?

If the most recent presidential elections are any indication, the chances that these issues will be raised are slim to none. While there was plenty of rhetoric about the dwindling middle class, the last presidential election was noticeably devoid of any references to Americans living in poverty. In fact, The Nation reported that from 2008 to 2012, at least five consecutive presidential or vice presidential debates went without a single question about poverty.

While there was plenty of rhetoric about the dwindling middle class, the last election was devoid of any references to Americans living in poverty.

This first debate of the 2016 election is an opportunity for the leading Republican candidates to go on the record about the issues that matter most to working families.

So in an effort to help the candidates and the Fox team find their way, here’s a roadmap. We asked four Americans struggling to make ends meet about what they want to hear on Thursday:

Rachael Collyer, 22, Cleveland Heights, Ohio:

Rachael graduated from The Ohio State University with a major in Spanish and English. She works as a bartender with a fluctuating income that on a good day nets up to $14 an hour and on soft days earns her the federal minimum wage of $7.25 an hour.

She also has almost $26,000 in student loan debt.

Rachael can’t afford her own apartment, so after she graduated, she moved back home with her parents in Cleveland Heights, Ohio. She’s a volunteer organizer now for the Ohio Student Association because mounting debt is holding too many students and their families back. The state has decreased its college grants to students, she says, even though more than half of all jobs in Ohio will require a college education by 2020. It is no wonder then that about 68% of Ohio’s college graduates have an average of $29,000 in debt.

“We are like frogs in boiling water,” she says. “College debt has been going up and going up and suddenly we’ve reached this point where we yell, ‘How did this happen?’ “

Rachael wants the Fox News moderators to ask the candidates: Given the cost of attending college, most students work while they are in school. And, in Ohio, if a student works 40 hours a week at a minimum wage job, they won’t earn enough to cover the average cost of attending Ohio State. How do you propose addressing the wage needs of recent college graduates and current students so that paying for their college education is not a barrier to success?


Duane Edwards, 34, Fredericksburg, VA:

Duane’s life changed drastically when he was 14 years old. His father, an Army veteran, was killed in a car crash, leaving behind a wife and three children. At that moment, Duane told himself he had to find a way to earn money so he wouldn’t be a burden on his mother. So he secretly began selling marijuana.

He was eventually caught on a drug charge and sentenced to community-based probation. His mother tried hard to keep him straight, but she had to work to maintain the family and he took advantage of her absence. He says there were few mentors or teachers who looked at him and saw any potential. Without a job and no prospects, Duane eventually landed in prison and served a three-year sentence.

“Being incarcerated made me grow up,” he says. While behind bars, he earned an associate’s degree in childhood education, and he tutored other inmates who were trying to get their GEDs. He wanted to make good on his life when he got out.

So when he was released in December 2006, he had high hopes that he would turn around the troubled life he once lived. But it was dependent on him finding work. In the first six months alone, he applied to more than 40 jobs. None would hire him because of his record. Since he’s been out, Duane has applied to more than 120 jobs and has received call backs for just 15 of them, with most offering low-wage work washing or loading trucks.

Today, the married father of two girls, who are three and four years old, has a bachelor’s degree in theology and is a pastor at a local church. It’s taken him almost nine years since he got out, but he finally has a full-time job driving a truck, making $14.50 an hour. He says he’s grateful for the job, but says it’s still hard to make ends meet.

“I would like an opportunity at a good job so I can take care of my family,” he says.

He wants to ask the candidates: Given that the school to prison pipeline starts early, particularly for young black men, and there is a decided lack of opportunity for young African Americans, what is your plan to invest in schools in marginalized communities made up primarily of people of color so that the outcomes of the students in those schools are the same as in wealthier, predominantly white neighborhoods?

Patrice Mack, 45, Euclid, Ohio:

Patrice is the single mother of a 24-year-old daughter and three boys, a 14-year-old and 11-year-old twins. She owns her own home and has a college degree in business administration. Earlier this year, she left a job that paid her so little that her sons were eligible for government health insurance because she couldn’t afford the company’s insurance.

“You can have a degree and still struggle to survive,” she says. “I’m a paycheck away from poverty.”

Patrice is tapping into her retirement savings in order to get by until she finds a job. She is looking for work, but opportunities for good jobs have dwindled. And due to unpredictable, constantly shifting schedules, and a lack of paid leave and paid sick days, many jobs make it impossible to balance work and caregiving responsibilities.

She wants to ask the candidates: The minimum wage is at a level where working families can’t survive unless they work multiple jobs. So how do you propose we do a better job of parenting our children and being there for them, while at the same time earning enough income to provide for our families? And how do you think employers can incorporate paid leave or paid sick days?

Astrid Silva, 27, Las Vegas, NV:

Astrid grew up most of her life under the tinsel and lights of Las Vegas. As a young person, she was a standout student and graduated at the top of her class in her magnet high school. She’s earned associate degrees in arts and political science and is working on a bachelor’s degree. Astrid could be a poster child for today’s diverse and civic-minded millennial generation.

She’s also an undocumented immigrant.

At the age of four, Astrid rode a tire raft with her mother and crossed the Rio Grande. She wore black patent leather shoes and the “biggest poofiest white dress with purple flowers and a purple sash.” Her mother had wanted her to look pretty when they met her father in the States.

“As a young person, you understand,” she says. “I understood there was something different about us.”

She says their status affected her family in big and small ways. Neither she nor her mother were able to drive because they couldn’t get driver’s licenses. They wouldn’t go to certain areas, or leave Nevada, because they were worried they would get picked up by immigration authorities. And unlike other people in their neighborhood, they couldn’t leave the country and visit Mexico. She remembers the pain and sadness that overwhelmed her family when her grandmother died in 2009. Her father couldn’t leave and see his mother one last time because they feared he wouldn’t be able to return.

Their biggest fear came true in 2011. Her father was arrested and given deportation orders. He’s since been granted a stay, which he has to apply for every year, and Astrid says she doesn’t know how long it will last.

Since then, she has become a vocal advocate for immigration reform. President Obama even mentioned her in a speech where he deplored our “broken” immigration system.

Thanks to an executive order signed by President Obama that allows undocumented immigrants who came to the U.S. as children to remain in the country, Astrid has a stay until 2017.

But she says that too may end after Obama’s term ends.

“I’m trying to figure out how to keep my family together here,” she says. “This is not a political strategy. For us, it’s real.”

Her question for the candidates is: Given that there are 11 million undocumented immigrants in the United States, what kind of concrete plan do you have for immigration reform? Not one that dismantles what the President has done or that focuses only on border security, but that offers real solutions for issues such as family reunification; the ban on re-entry to the U.S. by undocumented immigrants that spans three to ten years; or the rights of asylum for undocumented immigrants?



You Work Until You Die

As we commemorate the 25th anniversary of the Americans with Disabilities Act (ADA), we have a lot to celebrate as a nation. We also still have a long way to go, as we see clearly when it comes to long-term services and supports. As a person with a disability, having a successful career as a health and disability policy analyst, I have benefited from its impact, but continue to see much left to be done.

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.

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.

This half-empty cup continues to impede progress toward the ADA’s vision of economic conclusion and participation in society.

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.



The ADA at 25: People with Disabilities Want Kids

Throughout this month, the disability community and its allies are celebrating the 25th Anniversary of the Americans with Disabilities Act (ADA). As a second-generation person with a disability, I had the good fortune of literally being born into the disability rights movement. My father ran a Center for Independent Living, and my mother—who was denied tenure early in her teaching career because she could only reach the bottom six inches of a chalkboard—worked in Disability Student Services. Today, my husband and I are raising two children with disabilities.

Here’s the question the disability community and the next generation now face: We got the ADA 25 years ago, so what’s next? The answer you get depends greatly on whom you ask. My answer is likely a bit untraditional: we must protect the civil rights of parents with disabilities.

In 2012, the National Council on Disability released “Rocking the Cradle: Protecting the Civil Rights of Parents with Disabilities.”  The report examined the disparate treatment of parents with disabilities in matters of child custody, foster care, adoption, and family law. Right now in 37 states parents with disabilities can have their custodial rights terminated on the basis of having a disability. Additional rights to be an adoptive or foster parent, to have access to reproductive technology, and to be treated fairly in the eyes of the child welfare and family court system are also impacted by discrimination on the basis of a parent’s disability.

“She’s blind, how will she ever read a thermometer to see if her child has a temperature?” “He uses a wheelchair, how will he ever play baseball with his son?” Statements such as these are actual reasons that children have been stripped away from loving homes, according to the testimonies of Carrie Ann Lucas and Kelly Buckland at last week’s quarterly meeting of the National Council on Disability. Lucas is one of only four attorneys in the nation who work on these kinds of cases, and Buckland—the Executive Director of the National Council on Independent Living—wrote the first laws to protect civil rights of parents with disabilities in Idaho.

Right now in 37 states parents with disabilities can have their custodial rights terminated on the basis of having a disability.

The bias against parents with disabilities is well embedded in the history of the United States. During the first half of the 20th century, the eugenics movement led to more than 30 states passing legislation that permitted the involuntary sterilization of people with disabilities. This legislative trend was based on the belief that people with disabilities and other “socially inadequate” populations would produce offspring who would be a burden on society. The Supreme Court subsequently endorsed this policy, and by 1970 more than 65,000 Americans had been involuntarily sterilized. Even today, 25 years after the passage of the ADA, several states still have some form of involuntary sterilization law on their books.

Parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children. As we found in Rocking the Cradle, removal rates when parents have a psychiatric disability have been found to be as high as 70 to 80 percent; when the parent has an intellectual disability, 40 to 80 percent. In families in which the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce, have more difficulty accessing reproductive health care, and face significant barriers to adopting children.

Parents with disabilities and their children are disproportionately—and often inappropriately— referred to child welfare services. Once involved in the child welfare system, these families are permanently separated at disproportionately high rates for a number of reasons, including: inclusion of disability as grounds for termination of parental rights (TPR) in many state statutes; the disparate impact of certain provisions of the Adoption and Safe Families Act of 1997 (ASFA); perceived limits on the application of the Americans with Disabilities Act (ADA), especially at the termination phase; bias, speculation, and the “unfit parent” standard; and a lack of training in relevant systems regarding parents with disabilities.

People with disabilities also face significant barriers, and even outright discrimination, that can prevent them from accessing reproductive technology that can enable a person to become a parent, such as assisted reproductive technology (ART). ART providers regularly discriminate against people with disabilities. Additionally, the growing costs of ART, combined with the limited insurance coverage for these treatments, leave many people with disabilities unable to afford the treatment. Half of all women with disabilities are covered by Medicaid and existing federal law allows states to refuse coverage for fertility drugs (but not Viagra.) These discriminatory policies and practices impact all demographics in the disability community including disabled service men and women. For example, in May of this year the Washington Post reported on Holly and Alex Dillmann who were denied access to in vitro fertilization (IVF) via their Veterans Affairs health plan, which up until this year banned the procedure. Their case is just the tip of the iceberg.

Recent guidance from the Departments of Justice and Health and Human Services reiterating these agencies’ legal obligations pursuant to the ADA is an extremely positive development. However, further action is needed at the federal, state, and local levels to give parents with disabilities a level playing field:

  • Congress, the Administration, and federal agencies should fund research on parents with disabilities and their families.
  • States should eliminate disability from their statutes as grounds for termination of parental rights and enact legislation that ensures the rights of parents with disabilities.
  • Congress should address the disparate treatment experienced by parents with disabilities by adding specific protections in the Adoption and Safe Families Act.
  • Congress should shift funding priorities at the federal level so that states have a greater incentive to provide services to families while the children are maintained in the home, as research has shown that in-home services are most effective, particularly for people with disabilities.
  • HHS and DOJ should collect annual data on parents with disabilities and their interaction with child welfare agencies and dependency courts; and DOJ should include such matters in its enforcement priorities and consider violations of parental rights to be violations of civil rights.
  • The HHS Children’s Bureau should collaborate with the National Institute on Disability and Rehabilitation Research (NIDRR) in funding and directing the Institute’s National Center for Parents with Disabilities and Their Families.

Despite a dark history marked by the eugenics movement, increasing numbers of people with disabilities are choosing to become parents. My husband and I knew there was a 50% chance that our children would have dwarfism, and that made the idea of parenthood even more attractive, as we perceive dwarfism as part of our family’s culture. The right to parent without interference is protected by the U.S. Constitution. A child should only be taken from a custodial parent when the disability creates a situation that cannot be alleviated or accommodated.

I dream of a day when removal of a child from a parent with a disability is a rarity, so that in another 25 years the 4 million-plus parents with disabilities will be celebrating the ADA’s 50th Anniversary as grandparents.