Susan Daniels

Susan Daniels

Social Security: A Report on Disability Insurance,
Work Incentives, and Return to Employment Initiatives
by Susan Daniels

From the Editor: Dr. Susan Daniels is Associate Commissioner for Disability in the Social Security Administration. She addressed the NFB convention on Friday, July 4, 1997. This is what she said:

I want to give you a quick update on what's going on in Social Security and then invite you to accept a challenge. Social Security Disability Programs, the two that serve this nation's people with disabilities (the Social Security Disability Insurance Program and the Supplemental Security Income Program), are very large programs and growing. Ten years ago, in 1986, we served five million Americans who had declared themselves vocational failures and out of the work force. We did not go out and recruit those five million people; they came to us. In 1996, ten years later, we have almost ten million Americans on cash-income-supports who have come to us saying that they are too disabled to work. In 1986 we spent fifty-two billion dollars on cash benefits to people with disabilities. In 1996 we spent sixty-eight billion dollars on cash benefits, and by the year 2000 we are projecting over a hundred billion dollars a year in cash supports.

Now, ladies and gentlemen, these are the very same ten years where open-heart surgery is almost day surgery, where people with mental illness are having relief of symptoms using psychotropic medication, where technology has assisted all of us in leading better lives. Certainly I'm a user of access technology; I have a scooter because I don't walk too well—I'm an old polio. I see a lot of computers around here—I use one myself. I love my computer. It helps me communicate with the world. Technology is a wonderful thing, and in the last ten years access technology has grown for all of us with disabilities.

Access to the world has grown. Ten years ago New Orleans didn't have but four or five curb cuts, and they were down there right near the end of Canal Street. Today New Orleans is almost fully accessible. Many cities around the country are fully accessible. Finally, in the last ten years we had a full generation of young people graduate from public schools because they had access to free, appropriate public education.

Now, one last thing, and I bet you the one we're all the proudest of: in the last ten years we had sweeping civil rights legislation, the first in the world passed to prohibit discrimination against people with disabilities. These were a fabulous ten years, and yet in this very same ten years the number of people on Social Security Disability doubled, and the yet more and more people are coming to us saying that they areexpenditures more than doubled. All of these good changes, and vocational failures. What is going on? I was very curious about this problem and very interested in it. I asked the experts, and I got a lot of answers. They told me a lot of different reasons why people with disabilities were having a hard time in the labor market.

We did the unusual; we went around and asked our customers, people with disabilities. We sat with them at round tables all over this country, and we asked them the same question I just asked you, "What's going on here?" And here's what they told us. They told us: it's about health insurance, Susan. The access that we have to health care is through the cash-benefit programs, Social Security Disability Insurance and SSI. If we don't go through that door, there's no way we can get the health insurance that we need. We are, many of us, uninsurable in the private market at any price. Whereas we may be able to replace the cash benefit with earnings, we cannot replace the health care.

Second, they said to us (and this is something that I bet resonates with you) it's about the services we receive. We want choice. We want to choose the kind of services we need. We want to choose the providers. We want to be treated like adults and not children—work and going to work's a grown-up activity. They also said, "We don't understand the work incentives, and neither do you." That was kind of shocking, but it seemed pretty true. The work incentives are complicated. So they said they wanted more choice, and they wanted a simpler way to use the work incentives. Finally they said to us, "The Social Security system is an all or nothing system—you either get in, and you get the things that you need, or you can't get in at all, and you get nothing." We need more kinds of support; we need more flexibility in the system; we need help sometimes, and sometimes we don't need any help at all. We need to be able to call the shots about when that happens. And so, ladies and gentlemen, we listened to our customers, and we put together a series of proposals.

Today I'd like to tell you about two of them that are currently in Congress, and I am frankly going to ask for your support. We have submitted to the Congress a proposal to allow Social Security beneficiaries who are on the disability rolls to get a ticket and to take this ticket to any provider of their choice to receive the services of their choice. If that ticket to services results in employment, the provider will be paid when the person goes to work. Now I want to tell you the characteristics of the ticket because I want to be sure you understand that I understand that this is not the answer to all problems, that people with disabilities, and particularly people with visual impairments and blindness, need a broad range of services that no one person, organization, or program can give them. But the ticket gives us really three things I think our customers want. They want choice: they want to decide when to use the ticket, with whom, what kind of provider, and for what services. This choice is very, very important to them, and so now it is very, very important to us.

We want to see innovation. We want all the different people who think they can help beneficiaries find jobs, get jobs, keep jobs, and do well in jobs to come to the table and offer their skills. That means we hope to see the kinds of innovations we haven't seen yet but that may be out there, and maybe the ticket will help spawn ideas. For instance, wouldn't it be wonderful if co-ops of people with disabilities themselves could form businesses and use the ticket? Wouldn't it be wonderful if families who have disabled members could form family co-ops to start businesses or to run businesses? Wouldn't it be wonderful if people who have technology would put that technology to work, not in a rehabilitation format (the kind we always see), but just in a work format? And so we are very, very interested in spawning innovation.

Third, the ticket pays for results. That means that the services that we are focusing on are those that lead to real jobs for real pay, for a really long time. This is for success in the job market.

Finally, the ticket has a companion. (We call this getting the incentives right.) The companion is the opportunity for individuals who are using Medicaid and are on SSI to buy Medicaid on a sliding scale fee when they leave the rolls and no longer need the cash supports.

The House Ways and Means Committee is likely to consider the ticket and will certainly be doing hearings this year on the ticket. I hope as an organization you all will participate in talking to Congress about your needs and about your preferences about services, and I hope that you will use your voice—even if you don't like the ticket, by the way—to communicate with the Congress about your needs as a person with a disability and your needs for real employment that has real wages and real benefits.

Now, I want to offer you a challenge. Two weeks ago over six hundred women with disabilities from around the world convened in Washington, D.C. These women participated in the first-ever international leadership forum for women with disabilities. I was very, very proud to co-host that activity with my colleague Judy Heumann. We had women with all kinds of disabilities—physical disabilities, mental disabilities, psychiatric disabilities. We certainly did have quite a few women there who were blind. From these women we learned a beautiful phrase that I would like to share with you. Then I would like to ask you to join me in a challenge. They kept saying that to be women with disabilities today identifying themselves as people with disabilities, they were going to be loud, proud, and passionate about themselves and their pride in themselves. We heard over and over again "loud, proud, and passionate." I can tell you, this group could certainly meet those criteria. I've seen a lot of loud in this group. I've seen a lot of proud, and I'm sure, although I haven't seen it, there's been quite a bit of passion going on as well.

There are three things I'd like to ask you to be loud, proud, and passionate about as well. The first is about blind solidarity. Anyone in the disability movement who looks at the accomplishments of people with blindness in this country, with their ability to organize for themselves, will learn a lesson in solidarity. You are a model. Congratulations. Other people with disabilities are learning from this model. They are copying you, and you should be proud of that. Imitation is the best form of flattery. Your blind solidarity, as I call it, is something you should be loud, proud, and passionate about.

But let me ask you to also broaden your solidarity, because each and every person in this room—and by the way, I see many baby-boomers, and I know you think of yourselves as very young, but I know you're not. I'm an early baby-boomer, and I'm almost fifty, so I know that some of you are younger than me, but not much—creepin' into middle age. That's the part of life where chronic illness and other disabilities begin to show up. I say this only to remind you, as I remind myself, that the fact that one little part of your body went wrong early in your life doesn't mean the other parts are exempt. That means that like every other American you are facing aging and a very serious crisis in health care and long-term care.

I ask you to think about this in solidarity with other people with disabilities and with others of your age-mates who are non-disabled. As we age as a society, we no longer have the family structures of extended family to care for us in our elder years, and we no longer have access to the kinds of public-supported health care that we have come to expect. Please think about this carefully. Although you and I are both people with disabilities, we also face the challenges of aging and a growing aging population in our society. Please use your lessons in solidarity to stay active in the health care debate and make sure that health care will be there for you, for your brothers and your sisters who are disabled, and for your friends and family who may be non-disabled.

This solidarity that we learned from you can be used for good use in the betterment of all America. That's your first challenge.

Second, all of the services that we experience, all of the ones that we have, are squat if we end up poor. I want to say that again. They're squat if we end up poor. Working is the only way Americans can get out of poverty. You need to insist, you need to be loud, proud, and passionate about economic opportunity for yourself, and you need to hold all of your service providers accountable for giving you the kinds of services that make you competitive and keep you competitive in the labor market. This is important for your economic welfare, and the rest is squat if you're poor. Now, I'm loud, proud, and passionate about not being poor.

Third, I want you, as you have challenged so often, to be loud, proud, and passionate about challenging assumptions people have. I know that you have challenged everyone in this country in the attitudes towards people with blindness, but I want you to help us challenge their attitudes towards everything that we often take for granted. Let me give you an example right here in this room. I would like everyone who did not bring their own chair to stand up. If you did not carry that chair in here, get off it, stand up. Yes, I know, you've been sittin' too long. Stand up. Look at the people up here at the podium. On your feet.

You thought they were special and could stay seated: unbelievable. No, stay standing, I didn't say sit down. First of all, you've been sittin' for two hours; you need a little circulation.

I want to talk to you about how special that chair is. You know, a lot of people go around apologizing: "Gee whiz, I need this in Braille, or I need this on tape, or I need this on disk." It's a big apology. But you know, most people go around and they don't apologize for the chair they sit on. Right? How much did that chair cost that you're sittin' on? About seventy-five dollars. Since I brought my own, I don't need that chair. That's right. Now, you better think about this with all of us. People who are non-disabled take everything in the environment as a given even though it's expensive. Go ahead and sit down; accommodate yourselves.

I want you to remember that everything in this room is an accommodation to somebody. Now, let's talk about those accommodations. The chairs are accommodations to you accessibly vertical people. You expect a tushy shelf to be put everyplace you go, don't you? You sure do. You expect it in this room, and you expect it in the restaurant, on the bus, every place you take your tushy. You expect somebody else to put a shelf for you to put it on. Is that not right? Yes it is.

Now if this was a different group, I would say I want everybody to look up at that ceiling, and what do you see? Lights. Now how many miles of wire does it take to put that many lights in a room this size? Literally hundreds of miles of wiring have gone into that ceiling. Now how much did that cost for all the people who are visually dependent to accommodate them? That's right; it cost a lot of money to light a room, and guess what? People who are visually dependent don't want just rooms like this lit; they want every room they go into lit up—every single solitary one. The federal government could run a lot cheaper and not pay nearly as much for electricity if they only hired blind people.

Now, don't say to me, "But Dr. Daniels, how much does it cost to put one of those lifts on a bus?" I say, "I don't know, how much does it cost to put one of those seats on the bus?" Damn good question, but I don't know. It seems to me that we have forgotten that the man-made world of lights and chairs and escalators and elevators, etc., is all made so that everybody can be productive and enjoy the environment in which they live and work.

So there is no need to apologize. People who are non-disabled don't say, "Oh, but I really need a chair," or "I really need some lights on," or for instance "I really need your voice amplified for me." By the way, if I step away from this mike like I'm doing right now, only people in the front row can hear me, but people in the back row, who depend on this amplification, can't. Everything in the built-environment is there for all of us to use, and all we need to do is make sure that everybody understands that it's for all of us.

So, ladies and gentlemen, let me ask you to be loud, proud, and passionate about solidarity; to be loud, proud, and passionate about health care; and please, to be loud, proud, and passionate about economic opportunities. Those are the keys to a great life in this country, and you deserve it. Thank you.

Following Dr. Daniels's remarks, several questions were asked. Here is a summary of those questions and Dr. Daniels's responses:

Jim Gashel: The Ticket to Independence is something we can support in principle and philosophically because we proposed legislation of the same sort in the Congress over ten years ago. We want greater choice for consumers in selecting service providers. We thought up the concept before it was popular to talk about choice in rehabilitation. We got choice put into the Rehabilitation Act of 1992, and before we get done, the provisions will be stronger in the 1997 amendments.

But there are a number of special criteria, conditions, and rules that address the needs of blind people in the Social Security Act. So policies written under the general rubric of the Ticket to Independence may affect us in considerably different ways from the effect they have on people with other disabilities. The National Federation of the Blind has conducted the Job Opportunities for the Blind Program in partnership with the U.S. Department of Labor for twenty years. Moreover, no one else in the entire disability field can organize a group of more than 3,000 consumers in one place. And we have training centers across the country that are highly skilled in getting blind people ready to engage in substantial gainful activity.

We would like to talk to you and other policy people at Social Security and make modifications where necessary to see that the Ticket to Independence really means what it says for blind people. We haven't seen the language—you may have talked to someone, but it wasn't us. So I'm asking that you and the NFB meet soon to straighten out this Ticket to Independence.

Susan Daniels: That's easy. Next week we will post the text of the language we have drafted for the Ticket to Independence on the Internet and I would like to hear from you about the problems and the issues we can start working on right now.

Gashel: One of our main criteria for judging the Ticket to Independence is going to be its financial aspects and how it affects blind people. I would like a yes or no answer to this question: the Social Security Act currently has provisions that require an applicant to accept rehabilitation services if they'reoffered, and if you don't you will be cut off. Does this Ticket to Independence require an individual to accept a job even if it would pay less than the combination of tax-free Social Security benefits and earned wages at the level of substantial gainful activity? Because if the person's going to fall off the cliff,this is not a Ticket to Independence.

Daniels: Jim, you have two very important issues there. The first one is really easy, and the second one is really hard. The Ticket is a voluntary program; this is not a country requiring compulsory work. A person enters the program voluntarily. You can take the ticket and tear it up and put it in a drawer, or you can use it with any provider you choose. No one is required to take a job.

Gashel: People are under present law. Daniels: Under present law a requirement says that, if youare offered services and without due cause refuse service from a state rehabilitation agency, there can be a sanction. It is rarely used because we believe that people have to choose to work.

Gashel: Is it due cause that you are going to lose money by working?

Daniels: That is the second and more difficult question. How do we create a system where working makes sense? That's a lot harder. We still have to work on that. It doesn't make sense for a lot of people to fall off that cliff. We know that people work up to it and then back away. We all agree that this is a problem, and we don't have a solution on the table for that right now.

President Maurer: Commissioner, let me say this: some people don't work up to it. Some people are afraid enough of it, they've heard enough about it, that they don't even try because they're afraid that they might get too close. They don't know enough about the technicalities of it. A lot of people don't come with the brain power and the background in Social Security law that you and Mr. Gashel possess. They have heard that, when you go to work, you lose your benefits, so they sit tight and don't lose them.

Gashel: I thank you for the candor of your answer. It's going to be a problem for us really to support this unless we address that issue. I hope you understand that, but we look forward to the meetings to address that issue.

Maurer: I did not say what I did in criticism of you. I suspect you are where you are because you don't have a whole lot of choice. But I would like for you to think about that and help us to remove the disincentives that currently exist under the law.

Daniels: I think you can count on us for that. We are very, very concerned about the disincentives. It is hard to craft solutions that work but do not also create other, unintended effects. I have committed the rest of my career as a public official or back as a regular street-level trouble-maker to see if we can't find a way to make work make sense for people.

Gashel: I would add, by the way, that the Congress found a way to do it for seniors; they ought to find a way to do it for blind people. And I would also say that President Clinton signed that bill.

Joanne Wilson: You talked about co-ops. We have formed some blind co-ops in this country. One of them is the Louisiana Center for the Blind. There are two others, one in Minnesota and one in Colorado. These were programs started by blind people for blind people. We have a national and international reputation as model rehabilitation programs for blind people. Lots of blind people want to come to us. A number of years ago, when the demonstration grants were first formed for Project Network, I was asked to come and do some presentations to the folks who were going to be working on that. On several occasions I went and did training sessions on blindness and how to network with blind programs and so on, and they loved it. Then I went home and never heard from them again. We never got a single referral, nor did Minnesota or Colorado. My concern about the Ticket to Independence is two-fold. How do small providers—and in the disability field (competing with groups like Goodwill) we are small providers—how do we get referrals?

My second concern is the payment schedule. As the rules read now, it would be eighteen months until we could get payment—the nine months of our program and nine months of work experience. As private-provider vendors this is not an incentive. So this new system has been very discouraging for us. Can you give us some help here?

Daniels: You have identified one of the chief vulnerabilities of the Ticket; it does require some level of capital investment by the provider. We recognized this problem very early on, but we have not completely solved it. We have talked with small providers, and I am glad to have your feedback. We have been working with foundations around the country, some fairly large ones, to begin to think about capitalizing this as a real investment in people. So we are looking for other alternatives.

The real issue for us as we formulated the ticket was: is there something we could add to what already exists now that would not require the Congress to take funds away from some other project or to come up with an appropriation? That would kill it right now because we are in a balanced-budget scenario. We are looking for something that will add on to the current situation. We believe that the ticket does not replace anything that folks currently have. Will it work for everybody? I don't think so. Will it work for some people? That's the question we are trying to find the answer to now. In a very tight budget environment it is a choice between doing something that is very frugal and doing nothing at all.

Wilson: You talked about forming co-ops, but in the blindness field, which is a very low-incidence disability, vendors like us aren't going to be able to participate in this program, and a lot of blind people are going to be denied the services they want and need. Lots of these co-ops will be out of luck unless we figure out a way of financing the program better up front.