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Imparato Speaks on Future of Disability Policy at University of Pittsburgh

Time Distribution :2011-11-10 13:42:39author:admin source:[AAPD] view count:0 Friend Comments 0 strip

AAPD's President and CEO, Andrew Imparato, delivered a speech at the University of Pittsburgh's Thornburgh Family Lecture Series on November 4, 2010. Entitled "From Civil Rights to Economic Well-Being: New Directions in Disability Law and Policy," Imparato captivated the audience with what he believes needs to happen in order for people with disabilities to gain equality.


Courtesy of Joseph John Kappelwski, Jr.

“From Civil Rights to Economic Well-Being: New Directions in Disability Law and Policy”
Thornburgh Family Lecture, University of Pittsburgh
Remarks of Andrew Imparato, President and CEO,
American Association of People with Disabilities
November 4, 2010

Good afternoon. Thank you Governor Thornburgh for inviting me to speak with all of you. You and Ginny and your great family have done a huge service to all of us in the disability community for several decades, and I am grateful for your leadership and for your support of me and AAPD. I also want to acknowledge and thank Chancellor Nordenberg, Provost Beeson, Deans Crossley and Brubaker, and Associate Dean Seelman for your presence and your support of this lecture and your leadership and interest in disability law and policy. And thank you all for joining me for our conversation about new directions in disability law and policy during the year in which we mark the 20th anniversary of the Americans with Disabilities Act and reflect on our national commitment to civil rights and dignity for people with disabilities. I say “our” conversation because we own this together. We share responsibility to move both the dialogue and our policy forward. That is why I don’t plan to take all of my time to talk to you—I’m going to reserve some time to talk with you. I find the dialogue with the audience is often the most interesting part of these kinds of events. So thank you for participating in this.

My name is Andy Imparato, and I am president and CEO of the American Association of People with Disabilities (AAPD). Last week, I announced that I will be leaving AAPD later this month to become Senior Counsel and Disability Policy Director for the U.S. Senate Committee on Health, Education, Labor and Pensions, Chaired by Senator Tom Harkin of Iowa, a former Thornburgh lecturer. I want to be clear that my remarks today reflect only my personal views and have not been coordinated with Senator Harkin and his policy staff, and therefore should not be taken as an indication of Senator Harkin’s views or the views of the Senate HELP Committee.

Founded on the fifth anniversary of the signing of the Americans with Disabilities Act (ADA), AAPD was created to organize the disability community, defined broadly, so that collectively we would have more power politically, socially and economically. AAPD pursues its mission through non-partisan voter registration and voter mobilization initiatives, leadership, mentoring, and DC-based internship programs, public policy advocacy and research, and participation in a range of coalitions like the Leadership Conference on Civil and Human Rights.

20 years ago, we passed the Americans with Disabilities Act, the ADA. As you know, this groundbreaking law brought people with disabilities into the umbrella of civil rights protections. The law protected people with a wide range of impairments and conditions from discrimination in the workplace, in places of public accommodation like colleges and universities, in state and local government, and in telecommunications. The ADA literally opened doors for people who had experienced physical and attitudinal barriers to participation in the public sphere. In sum, the ADA took a sledgehammer to the institutions and practices that segregated 1 in 5 Americans from the rest.

Though its drafters and champions envisioned the ADA as a road to independent living, equal opportunity, and self-sufficiency, we are a long way from achieving those goals. Twenty years later, we spend 440 billion dollars per year on federal programs designed in the 50s, 60s and 70s to warehouse—not empower—people with disabilities.

Today—20 YEARS LATER—our country still requires 18-year-olds with disabilities to prove to the government that they cannot work in order to get income supports and the corollary acute and long-term care coverage provided by Medicaid. That’s right, 20 years after the ADA, our public policy continues to force young adults with disabilities to retire.

Every time we do this --every time a young person ends her bid for success before it starts—a piece of our civil rights mission fails. Independent living, equal opportunity, and hope for economic self-sufficiency die. We spend 440 billion dollars per year on giving up.

Giving up isn’t the goal of civil rights.

But what are we trying to do with these civil rights we’re legislating?

Our goal is to make it possible for people with significant disabilities to exercise equal economic power through truly equal economic opportunity.

So today I’m going to talk to you about:

Where we’ve come from in this movement toward civil rights for people with disabilities;[1]
What our federal policy is not doing to promote truly equal opportunity and equal economic power for 1 in 5 Americans.
This will be both our massive expenditures on poverty-oriented disability entitlements;
In our still-segregated education system; and
In federal employment, which should set the standard for fair employment practices.

Equal opportunity isn’t just an abstract idea. It’s about people. What we call “civil rights” is the bundle of things that derive from our status as human beings and make our full and equal lives possible. Every civil rights law we have came about as the result of thousands or millions of human struggles—and was designed to change the course of millions more.

It’s their stories that illustrate where we’ve been and what we’ve got to do. I want to share two stories to illustrate what I mean.

First, what are we talking about when we speak of “disability?”

I’m a parent of two boys, a 17-year-old and an 11-year-old. When the 17-year-old was 3, my wife and I were invited to come to his preschool class and talk about what we did for a living. At the time I was at the Equal Employment Opportunity Commission (EEOC). So my wife is a history professor and she came to the class and brought age-appropriate historical artifacts and kind of wowed the preschool teachers.

So the pressure was on when it was my turn to come and talk about what I did as a lawyer for the EEOC. And I wanted to get across that I was a lawyer, that I worked for the federal government, that we did civil rights in the workplace, and that my specialty was disability civil rights. And I thought the hardest thing for the 3-year-olds was going to be the disability idea. So I decided to practice on my son. His name is Anthony Gareth. We called him Agee at the time. I said Agee, do you know what a disability is? And he said, “yeah.” And I said, “what is it?” and he said, “I don't know.” And I said, “well, you know like somebody who uses a wheelchair…who do you know who uses a wheelchair?” He said “Chris Griffin.” He knew Chris because she worked with me at the commission and whenever he would come with me to work she would give him presents. So she was high on the radar screen. And I said “or somebody who's blind and uses a white cane.” I said “who do you know who is blind?” He said “Chris Kuczynski.” He knew Chris because Chris and I commuted on the train together, and sometimes we would give him a ride home from the train station.

Then I said, “Agee, sometimes people have a disability but you can't tell from looking at them that they have a disability. Some people call that a hidden disability.” And I said, “Can you give me an example of a hidden disability?” And Agee without missing a beat said, “like, being a lawyer?” Sometimes the true stories are better than anything that you can make up. But in all seriousness, it was interesting. My 3-year-old at the time, all the people that he knew who had disabilities happened to be lawyers, which some might see as a sign of progress.

The thing is, his dad has a non-visible disability. It’s not just that I’m a lawyer, though he might be on to something there. For my hidden disability is known as bipolar disorder, or manic depression.

I graduated from law school in 1990, the year that the ADA was enacted into law. And my last semester of law school I had my first serious episode of depression which later led to my diagnosis. The way it affects me is that I go about six months out of the year with a lot of energy, a lot of self confidence, and not a lot of patience. And then for the next six months my energy goes down and my self confidence goes down, and I am a lot easier to be around.

Another story from my early career illustrates something that happens a lot to people who have non-apparent disabilities. When I was finishing a post-law school fellowship as a staff attorney at the Disability Law Center in Boston, I was applying for jobs at a lot of organizations around the country. One of the places I applied was a national organization that did advocacy for people with mental health disabilities. So I self-identified in my cover letter as being a "mental health consumer." It was for a staff attorney position. The lawyer who was screening the resumes called one of my references and asked her about what she knew about me being a mental health consumer, which was illegal. He violated the ADA when he did that. My reference told him, "You know, I think Andy is fine, but you should really talk to him about it.” I came to Washington to interview for another position, and I told them “I'm going to be in Washington anyway, do you want to interview me while I'm in town.” They said “sure.” The interview was with two lawyers, including the one who had called my reference. Both of them were nationally known advocates for people with mental health disabilities. At the end of my interview I said I know you talked to one of my references about me being a mental health consumer. I want to take this opportunity to answer any questions you may have. The lawyer who talked to my reference didn't say anything. He seemed nervous. The other lawyer who seemed more nervous said, "well, is there anything you want to tell us?," which is probably the only legal thing she could say at the time. I talked a little bit about my experience and why I thought it was relevant in terms of the mission of the organization that they worked for. And her initial reaction was, "oh, come on, Andy, we all see a therapist, why is that relevant?" I think in her mind they represented the people with real severe psychiatric conditions and I was just a neurotic young lawyer. So I talked a little bit more about my experience in part because I wanted to get over that hurdle of whether I was just neurotic. Then it was like a light bulb went off that I was bipolar. She talked about a bad experience they had with a staff person who was bipolar, who was inappropriate at staff meetings. Needless to say, I didn't get the job. But I've been telling that story my whole career.

One of the reasons I like that story is that similar things happen to a lot to people with non-apparent disabilities, and that's part of the problem we've had with the Supreme Court. The idea is either the disability is not significant enough to matter so get over it, or it's so significant that you're no longer qualified or desirable for the position that you're applying for.

That’s a completely inaccurate picture of how disability affects a person’s life in the workplace. Now, I’m speaking to you about my experience, and that’s something I have done freely for a long time. But there are still many people identified as bipolar who are “closeted” about it in the workplace— 20 years after we passed the ADA.[2] That tells you something about the state of play for many people with this disability.

For me, this disability takes a predictable course, but a lot of folks who have the label “bipolar” don’t have as predictable a mood cycle—and that changes how they experience work, but without making them any less qualified. Some people can go through several cycles in one day —from high energy and euphoria, to agitation, to depression, and back to the start. Their mood cycles can even be subtle enough that it’s hard to know that it’s starting—so the coping strategies kick in that much later. It can be frustrating and totally exhausting. And when you’re managing all of this while doing your job, it feels unfair. I’ve heard some people describe the experience as having two jobs: the job you’re hired to do, and managing your disability. So I can say with certainty—for people who deal with serious, non-apparent disabilities in the work place; any policy—whether it’s court made, or regulatory, or how we spend our federal dollars—that makes it more difficult for a person to work is the wrong policy. And that’s what we have to fix.

I think part of our challenge as a movement is creating that broad space where, yes, it's real, yes, it's significant, yes, it can lead to discrimination, and that's why we need protections against discrimination on that basis, but yes you're also qualified and capable. And I really do believe that that's not unique to bipolar disorder. That happens across a broad spectrum of conditions, and it happens to conditions that aren't apparent or visible, where people just assume that it's no big deal or it's a huge deal and there's not as much room in between when people are recruiting folks for jobs. I think that you can apply this to lots of disabilities— it’s not simple. We haven’t gotten as far as we need to go. But that doesn’t mean we haven’t come far, because we have.

I started to work in the disability field as I was coming to terms with my disability, and working with the independent living movement and the disability rights movement in Boston. I was encouraged by my colleagues to self-identify as a person with disability, to be open about it, to see it as a source of identity and credibility for the work that I was doing, not as something I needed to hide or be ashamed of. I think when we talk about the impact of the Americans with Disabilities Act, we shouldn't miss the part about people owning their identity. I think colleges and universities can play a useful role in that process by offering courses where students can learn about the history of the disability rights movement, where they learn about disability law and policy, where they learn about disability studies. This kind of exposure can encourage students to ask themselves if what they are experiencing that's connected to the word “disability” can be viewed as a positive rather than a negative. So, we’ve looked at the way that the classic non-discrimination model of civil rights applies to a person with a non-apparent disability in the workplace.

That sets the stage for the next big question. What are our laws and programs doing—or not doing—to realize the purpose of the ADA: self-sufficiency, economic power, and opportunity.

The ingredients of an equal life and what we’ve come to agree is the American life.

Now, when I told you about my job interview where two disability rights lawyers violated the ADA, I left out part of the story. It’s the part of the story where I am accepted to college and law school, earn my degrees, pass the bar exam, and complete a fellowship. I couldn’t sit down at that interview table as a qualified candidate until I did that. The employment non-discrimination provisions of the ADA apply to what happens at that interview and beyond. There is a whole other set of laws and policies that influence the beginning of the story.

In my opinion, we are spending billions of dollars every year to steer people with disabilities away from that job interview—away from the path to self-sufficiency.

The numbers bear me out.

People with disabilities today, 20 years after the signing of the ADA, still have over twice the poverty rate of the general population. Our employment rates today, 20 years after the ADA, are about the same as they were when the ADA was passed. When the ADA was passed, about a third of people with significant disabilities were working. Today about a third of people with significant disabilities are working.

So what is going on?

From my perspective, our entitlement programs still get in the way of some of the goals of the ADA. Most of the money that we spend to support people with disabilities is flowing through programs that were designed before the ADA and that were designed to maintain people with disabilities outside the workforce in poverty. The 20th anniversary of the ADA is a great time for us to be saying that is not okay. That is doing harm.

Now, when you talk about changing entitlement programs, people get scared. It’s true that when you open up Social Security, Medicare, or Medicaid, there’s the risk that someone will pounce on it to gut it. So people get nervous, and when they do, they SAY, “Do no harm Andy. Be careful what you're saying could hurt people.” And I say, “Okay, I appreciate that. I'm not trying to hurt people. But let's not gloss over the harm that's already happening with the status quo.”

So what do I mean by that? Well what are the four programs that we spend most of our money on that serve people with disabilities? Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare.

We're currently spending around 440 billion dollars per year on those four programs serving people with disabilities. The definition of eligibility -- this is the gateway to all four of those programs -- dates to 1956. It says that in order to qualify as a person with a disability and to qualify for $440 billion of services and support, you have to go to the Federal Government, and tell them that you have a permanent condition, physical or mental, that's going to last at least 12 months or result in death, and that it prevents you from engaging in substantial gainful activity.

Most people understand that to mean that they're swearing to the government that they're unable to work. And a lot of people have to go through a process proving that they're unable to work. That is 100 percent inconsistent with the vision and the goals of the Americans with Disabilities Act.

It doesn’t have to be that way. The childhood SSI program gives us a completely different model.

Obviously they don't require children to swear that they can't work. So instead, they look at the impact that the disability has on the child, and if the disability makes an impact in enough areas they say, “Okay, you're eligible for supplemental income if you also meet the income requirements for that program.” There's no reason we couldn't have a similar program for adults that looks at the impact the disability has on that person-- without requiring them to swear that they're unable to work.

So from my perspective, if there's one thing we could be pushing around this ADA anniversary, we should be changing that gateway definition. That is the entryway to all of these billions of dollars. It’s the gateway between making policy that gets people to work, and making people prove that they can’t.

So that’s simple enough. So why aren’t we there, 20 years after the ADA?

When my son identified being a lawyer as a hidden disability, he was on to something. I have been working on federal policy for 17 years, and while I see great promise, I’ve also learned that we are currently entrenched in an untenable, inexplicable, nonsensical position with regard to the big four programs and the 440 billion dollars we all pay for them.

I served as a member of the Ticket to Work and Work Incentives Advisory Panel for the Social Security Administration. We looked at legislation passed in 1999 called the Ticket to Work and Work Incentives Improvements Act that was supposed to improve opportunities for people who are eligible for Social Security to work. When that law was passed, less than one half of one percent of the people who are on Social Security ever left the rolls.

Today, which is 11 years after the passage of that law, less than one half of one percent of people on Social Security ever get off the rolls. See a pattern?

We spent a lot of money implementing that law, but because we didn't deal with the definition of disability the program was flawed from the get-go.

If you spend years proving to the government that you can't work, and they turn around and give you a ticket and say, here, take this ticket and go get a job, most people are going to mistrust that and assume that the government is testing them to see whether they are really disabled. So because of the definition, you have a program that undermines itself.

Until we deal with the baseline flaw in the definition of disability all this other stuff that we do around work incentives is window dressing.

Another statistic that we learned when we were on the ticket panel is for children that go on to the SSI rolls before age 18, the average length of time that they stay on the rolls is 27 years. So look at that from the federal government's perspective. If you know that you're going to be in a relationship with this child and now adult for 27 years, what can you do at the beginning of that relationship that might lead to better outcomes over the span of that relationship? That’s what we tried to focus on in the ticket panel. We actually suggested creating a new program called “transition to economic self sufficiency” that would not require people to swear that they're unable to work. We suggested starting with the 14 to 28-year-old population and give them services and supports that are flexible that can get them on a path that would maximize their ability to contribute to their own support. Could be a micro enterprise where they're owning their own business, could be supported employment, could be competitive employment. There are a lot of ways to do it. It could be higher education. So people said to us, okay, that sounds great. How are you going to pay for it? And this was part of our challenge on the ticket panel. The Democratic staff on the committees of jurisdiction said transformation-- that sounds a little scary. First of all, don't hurt anybody who's currently on the rolls and be careful Republicans could come and slash the benefit programs.

They said that they were open to our ideas around transformation as long as we could prove that nobody would be harmed if we went to a new system. That's an impossible task I would argue for anybody to meet.

What we heard from the Republican staff on the committees of jurisdiction was we're very interested in your ideas as long as we don't have to spend any money. And it seemed like what both the Democrat and Republican staff were missing was the trend line for their programs. Between 2003 and 2010 we've gone from spending 300 billion to spending 440 billion on these programs. In 2003 they predicted that if the programs grew at the rate they were growing, by 2020 we would hit one trillion dollars. The current estimate is that we will hit one trillion dollars per year by 2018.

Now, let's take the Republican staff perspective. They say we're interested in transformation as long as we don't have to spend any money. If they do nothing, they're spending $700 billion new dollars on these four programs over a 15-year period.

From the Democratic perspective, it’s about saving the programs from being gutted—even at the expense of spending the money in a way that harms the people the programs are meant to help.

The ticket panel got a letter from the Democratic chair of the house ways and means committee and the chairs of the two subcommittees that oversee SSI and SSDI that informed our bipartisan panel that they were not interested in our ideas for transformation. They told us to focus our work instead on how to make the ticket program work better.

We got a very similar letter for Senator Baucus, who chairs the committee of jurisdiction in the Senate, the Finance Committee. Part of the reason they sent us those letters is they were told we were dangerous and that our final report would be used by Republicans to gut the entitlement programs. That's the toxic environment that we're dealing with in Washington around these issues. People don't want to have this discussion. People assume that we would only end up with something worse.

I’m on the advocate side and I believe that we're never going to be able to reform these programs if we get that toxic, deadlocked response when we try to make the programs better.

Now, the big four programs affect a person’s relationship with work and their incentives or barriers to work. But the employers themselves—we’ll call them the demand side of the employment equation—they have a role to play.

If we're trying to increase that employment outcome from one third of people with significant disabilities to something that would be closer to the general employment rate of the public, we need employers to have the right incentives and motivations to hire and retain and promote people with disabilities and keep people at work after the onset of a disability. I’m excited about things that are happening right now in the Obama administration on the demand side. First, the federal government-- the largest employer in the country—is strongly promoting the fact that people with disabilities should be a priority for federal employment. In July on the ADA anniversary, President Obama signed an executive order requiring the executive branch of the Federal Government to hire 100,000 new workers with disabilities over the next 5 years. The Obama administration is paying attention to the issue of hiring people with disabilities-- in part because the percentage of people with significant disabilities in the federal work force has gone down for the last 14 years. In the last year, instead of going down, the number is flat. But still, less than 1 percent of federal workers have a significant disability—compared with about 10 percent of the general population. We have a serious imbalance there and the Obama administration I think at the top has a commitment to do something about that. The other thing that they're doing which I’m excited about is a new initiative being lead by Patricia Shiu, the head of the Office of Federal Contract Compliance Programs, which enforces affirmative action requirements for federal contractors. Keep in mind that federal contractors represent a huge part of the economy, about 22 percent of the workforce. They are going to enforce the provisions in the rehabilitation act that require federal contractors to do affirmative action recruitment, promotion and retention for people with disabilities. That provision in the rehabilitation act, which dates back to the 1970s, has never been enforced. So from my perspective if we start seeing goals and time tables around people with disabilities for federal contractors, similar to what we've seen around women and racial and ethnic minorities for federal contractors, that could have a big impact on the demand side. At some point big employers, like Lockheed Martin-- all these other contractors are getting big contracts from the federal government --their practices are going to have to reflect this policy—for the first time. And that’s a huge shift toward what the ADA was supposed to do, and what our disability rights movement seeks to achieve.

Now, I said that, before our idea of a traditional workplace nondiscrimination law kicks in—as I’m sitting at that interview table—a lot has already happened. The government might have forced me to prove myself unable to work—something we need to change for everyone. Public or private sector employers might reach out to me as part of their diversity initiatives or not. But before all of that, there is education.

Education is a civil right—and another thing that I am hopeful about is that the current administration is looking at education, and particularly disparities in education, as a serious civil rights issue. Now, we all grew up thinking that education is a civil rights issue because of segregation; we learn Brown v. Board of Education, which turned 46 this year.

Adding 20 years of the ADA and 35 years of our special education law this year, how are we doing with integrating students with disabilities? Over 40 percent of students with disabilities are placed in separate classes all day. Over 40 percent of the kids that get labeled as needing special education are placed in segregated settings, separate but equal, the entire day. They have little or no opportunities to be with students who don't have disabilities. More than half of students with intellectual disabilities do not have any classes at all with their nondisabled peers, ever. That's a serious problem from my perspective. I’m not saying that it's never appropriate to have a separate classroom, but the idea that they would never be with their peers, not even in art class, that's pretty strange to me. But those are the statistics from the Department of Education.

Race compounds the segregation. African/American children with intellectual disabilities are far more likely to be in a segregated classroom, and far more likely to always be in a segregated environment—all day long. We're labeling children with the same abilities and indicators, and then taking a child who's African/American assigning her different services in different settings. We’re isolating her more. She is separate and unequal on two levels.

So who and what is supposed to solve her problem and give her the education she deserves? Which title of the U.S. Code should we flip to? I would say, that’s not where to start. There are opportunities for transformation in special education, but they require us to abandon some of the categories—we have to stop segregating issues and identities if we’re going to integrate schools.

As an initial matter, we can and should look to places where the segregation is not so pervasive. It’s encouraging to see that some states are already doing much better than others. In some states, over 80 percent of their children with disabilities have access to the regular general education curriculum. In some states it's as low as 17 percent. Still, we need to look at what’s working and give states the tools to do better.

But I would argue that we also need to take this as an opportunity to re-imagine the way that we address the needs of children.

In our segregation example, there’s a girl who is more likely to be separated from her peers because she (a) has an intellectual disability; and (b) is black. And maybe because her parents don’t have the resources to advocate for her, and they live in a state with very high segregation rates.

You could say that the system is violating her rights in at least two ways. But what it really comes down to is, the school is not meeting her needs.

I think that we need to reorganize our schools so that all of the teachers, staff, and resources are designed to serve all of the students. I’ve been reading the works of Dr. Sailor and Barrone, which my colleague Barb Trader from TASH shared with me, and what they are putting forth is what I see as a “universal design” concept.

For example, let’s look at teacher preparation. We need to stop dividing teachers into those who get trained in general education and those get trained in special education. We should have national standards for teacher certification that require all elementary teachers to be grade-level classroom teachers first who can teach reading and mathematics and then have the option of adding specializations. This means that every teacher would be able to give all students access to the general education curriculum—and every child would have a teacher trained to teach reading and math.

A corollary to this kind of teacher preparation would deal with what happens in the school building. I’m intrigued by the “response to intervention” model. This is a multi-tiered process where teachers respond to the students who are falling behind. The teacher begins with the whole group instruction, and then if a child has trouble learning the curriculum, the student moves to tier 2, where the instruction becomes more intense in a smaller group and more tailored to the child’s needs. If that doesn’t work, then the child moves to to tier 3, where the instruction becomes more individualized. Finally, if the student is still struggling, then special education services are considered. In this model, services and supports would be integrated and coordinated so that all students can benefit from them. Just as we have civil rights laws based upon different characteristics such as race, gender, or disability, schools deal with pools of money with specific targets. IDEA money, special education money, English language learner money, the title one money for low income students. In this model, the school would pool it together and then create a culture where the school responds to individual needs of students.

What I like about that is I see it as kind of a universal design concept. You're trying to create a school environment where any student who is not getting their needs met can get something different and have different things tried until they start getting better outcomes. And they don't have to be labeled as a student with intellectual disability or any other label in order to get different interventions.

It’s a new idea and for some people a very radical one but you know, I already stood up here and told you that we have to open up a trillion dollars worth of entitlements so I think we’re all ready for it.

So where did we start, and where are we going?

We started with people who have needs, and whom our established institutions—I’m talking about schools, entitlement programs, and the civil rights laws that our courts are shredding—are not serving as they should. The bipolar employee whose disability is perceived as too egregious to tolerate in the workplace, or not significant enough to accommodate. The 18-year-old who wants to work but has to prove that he can’t, and retire. The African American girl with an intellectual disability who is segregated from her classmates all day long.

We start with people whose needs aren’t being met, but what we all have to realize is:

People with disabilities—like all people—need the tools to meet our own needs.
The goal of the ADA is not to take care of people. The goal is self-sufficiency, which is a long word for

Work. It’s been decades since we passed the big four entitlements programs, twenty years since the ADA, and people with disabilities

Still have over twice the poverty rate of people without disabilities
Our employment rates are the same as when the ADA was passed
And about one third of people with significant disabilities are working

That’s where we are.

Imagine, for a moment, what a life with such a remote prospect of work would be like. What would it mean to live in a system that was keeping you from realizing your potential and sustaining yourself as a human being?

Charlotte Perkins Gilman, a writer, artist, and suffragist, painted what I think is the best picture of this. She believed that being kept out of the workforce and in the home was damaging to women. She also had a disability—depression—which doctors at the time tried to treat with more confinement, less work, less stimulation. She wrote:

For many years I suffered from a severe and continuous nervous breakdown tending to melancholia — and beyond. During about the third year of this trouble I went, in devout faith and some faint stir of hope, to a noted specialist in nervous diseases, the best known in the country. This wise man put me to bed and applied the rest cure, to which a still-good physique responded so promptly that he concluded there was nothing much the matter with me, and sent me home with solemn advice to "live as domestic a life as far as possible," to "have but two hours' intellectual life a day," and "never to touch pen, brush, or pencil again" as long as I lived. This was in 1887. I went home and obeyed those directions for some three months, and came so near the borderline of utter mental ruin that I could see over. Then, using the remnants of intelligence that remained, and helped by a wise friend, I cast the noted specialist's advice to the winds and went to work again — work, the normal life of every human being; work, in which is joy and growth and service, without which one is a pauper and a parasite — ultimately recovering some measure of power.

Recovering some measure of power.

Through the ADA we have laid the groundwork for people with disabilities to compete on an even footing with our non-disabled peers. But some measure of power—economic power—is still missing. Whether a person is confined to their room by a foolish doctor’s orders or because our government is requiring them to declare that they can’t work, the damage is the same.

We worked very hard to pass the ADA but it is going to take an overhaul of our big four entitlements and our education practices to accord that measure of power that the ADA intended— the power to work and achieve self sufficiency.

So this is, I believe, the central challenge we face as a community, and we too must get back to work, and make these changes.

Thank you.