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National Forum on Careers in the Arts for People with Disabilities

Keynote Addresses:
Ronald L. Mace



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Monday, June 15, 1998 (8:45 AM EDT)

OPENING REMARKS / INTRODUCTIONS

Tim McCarty

Good morning. Really exciting stuff and really positive comments from our sponsors last night, there was some follow-up with that, and we are going to keep working at this, and that future is based upon what we do in the next two days. It's rainy again in D.C., and we can't control that.

One of the things that I do, I do a lot of work in different cultures, and in native American cultures rain is a blessing because with the rain, the crops grow. So we are blessed this morning with the rain. We are going to begin with our speakers, followed by a panel discussion in this room. We are going to be here for the next couple of hours and I would like to reintroduce to you the vice president of education, Derek Gordon.

Derek E. Gordon

Good morning. Glad to see that all of us have joined us again for our very full day of work. We had a wonderful beginning to the forum last night. I thought that the performance and the spirit is something that will begin to carry throughout over the next couple of days.

Over the past six years here at the Kennedy center, we have seen a lot of changes, a lot of institutional changes and perhaps among most dramatic, physical changes. And this hall that you are in today is an excellent indication of the vision and commitment that has caused these changes to take place here at the Kennedy Center, to make the Kennedy Center more accessible for all, and the future even holds greater changes.

It's my pleasure to introduce to you this morning the person who is really responsible for that vision and that commitment, and who continues to take the Kennedy Center to the next level of excellence. He is Larry Wilker, president of the John F. Kennedy Center for the Performing Arts.

Lawrence J. Wilker

Good morning, and welcome. I just wanted to take a few minutes to tell you how very pleased that we are that you are holding this conference here at the Kennedy Center, and particularly in our newly renovated Concert Hall, which we are very proud of for its accessibility.

Accessibility and accessibility to the arts is very important to the Kennedy Center. We have a phrase that we have that we call performing arts for everyone, and we try to have that in view of everything that we do, from our free performances every night of the week, every week of the year at 6:00 p.m., and you were part of that last night, which has served over 250,000 people in the last 14 months, people who could come to see a performance without having to pay the price of admission, to making our facilities very accessible, and that has been quite a challenge because we inherited a building that was, and parts of it were totally inaccessible. It's a building with 2,000 doors, 133 restrooms, and six theaters, none of which were designed with accessibility in mind. So we have quite a challenge.

But this Concert Hall is our first step in making the building accessible and it greatly exceeds the ADA requirements which Ron Mace will talk to you about.

Every theater in the Kennedy Center is currently equipped with the infrared listening system. At every performance we have available large print programs and braille programs. Every show in our theater season is now sign language interpreted and audio described, and some performances of the National Symphony Orchestra are also audio described.

This forum is a great opportunity for you and for all of us to come together and discuss the issues and to create an environment for change. I look forward to hearing your thoughts and recommendations and I can assure you that the Kennedy Center will look for ways to embrace your ideas and your thoughts to result from this conference.

Many of you may know Kelsey Marshall, who for a number of years was our accessibility coordinator and unfortunately, Kelsey has been on medical leave and because of the seriousness of her condition, recently has gone on long-term disability. We will miss Kelsey very much. She has done extraordinary work here at the Kennedy Center and around the country.

I did want you to know that that position is now open and we are seeking someone to fill it. The job description is posted up in the Arts Cafe at the roof terrace level and I hope all of you will take a look at it and many of you will consider applying for that position.

It's now my pleasure to introduce you to Ron Mace. He is an architect who assisted with this Concert Hall renovation, and he will discuss many of the features of that renovation with you. He is a nationally known authority on design and program development for facilities for people with disabilities. The Kennedy Center is very fortunate to have had his services on this project, and it is my pleasure to introduce to you and to welcome Mr. Ron Mace. Thank you.

KEYNOTE ADDRESS

Ronald L. Mace

Good morning. Thank you. I'm really not quite sure what I have to say to you but I'll just tell you that it's a real -- to be here in front of you is not anything I would have ever expected to be doing, but it's one of the points in my career that's definitely a highlight, and I'm glad to be here.

I became an architect back so many years ago I won't tell you, but before it was a common thing with a person with a disability to go into the design fields. And I went to a school that was totally inaccessible and was told that I shouldn't be doing it and that I didn't belong there, or didn't have any business trying to do such a thing but for some reason I said, and my family said, well, we are going to do it any way.

I never intended to be a specialist in anything either. I was going to be an architect, go into practice. I did that. I got my license and I made it to become a practicing architect. And then I discovered how little I knew and how little the world knew about accessibility, and sort of just by default got into this area and became, guess what, a specialist, became known for this, because I was unique in those days.

I'm no longer unique. There are lots of us now as a result of legislation like 504, ADA, fair housing, there is more opportunities. There are many of us now. In fact, there are so many now that I'm starting to put together lists worldwide of architects with disabilities because I think we need them to help the rest of the building world to do what we have done here at the Kennedy Center.

I'm also one of the people who helped generate the concept of the universal design and I am director of a center that focuses on that idea, and that is the principle with which we approached the renovation of this Concert Hall, and I'll tell you a little bit about that now, explain some of the things that were done.

As a result of my becoming known and having done a lot of this work over the last 25 years, I was really delighted, to tell you the truth, to be asked to be part, for my firm to be part of the team that was going to do this renovation. What better thing than our symbolic center for the arts, our national place to be a real model of accessibility, ADA compliance, and universal design. So we really took it very seriously, and it was a battle, I'll tell you, and a magnificent change.

Universal design is something that goes, in my opinion, the definition of it is it's not accessibility or ADA, it goes well beyond that to make all things usable by everyone to the greatest extent possible, without necessarily assistance or adjustments. This Concert Hall now has been extensively redone to make that a reality. Some of the things you can see and some you can't. You would have to know what was here before to really somewhat appreciate what's been done.

It was largely inaccessible. There was no real seating for people who used wheelchairs and today this area in front has been completely redone. There is seating in the back for wheelchair users. There is a row across the cross aisle here. All of the boxes on all levels are usable and there are parking spaces for wheelchair users on all of them except for the top level. They are limited up there. But large numbers are possible. Someone just told me a few minutes ago that the ushers are now saying that they no longer count heads of wheelchair users, that people come from all entrances with ease and they don't have to be grouped and they don't have to say oh, there are 10 here or 3 there, because they are dispersed and not nearly as obvious.

The side aisles, the hallways have been completely taken out and regraded, and you may notice the ramp system back there to allow access both to the stage and to the seating areas. That's all new. The seating behind, over the stage, even these boxes up here are accessible to everybody. In the front area here from the cross aisle forward, many of the armrests on these aisles are removable for people who have any kind of mobility impairment or need to transfer from a chair into the seat. They unsnap when you need to remove them.

There are many other things. Our work was entirely within this Concert Hall. There are many other things that are going to be happening at the Kennedy Center in the future, in the other theaters and the rest of the building. One feature that I really am pleased to tell you it's here, although you can't see it today, is the fact that there is an accessible route from the seating up to the stage by going -- there is one that goes outside. You go out the door and come up down the hall and back up on to the stage, but there is also one under these boxes right here for those kinds of events. There is a ramp under these side boxes, and the floors that come in those boxes is removable for those events where you might have an interactive performance where the audience participates in what's going on and the artists can come on the stage and back down around, so you have circulation without going outside the Concert Hall.

This really truly puts us on the same opportunity level as anyone else. If others can walk through the boxes and on to the stage, we felt very strongly that there should be accessibility for wheelchair users. So the Kennedy Center has gone far beyond just the minimum requirements of the ADA just to meet compliance, but to really truly try to make it a universal facility. I'm very proud of that part of it. Thank you.

INTRODUCTIONS OF SPEAKERS

Gordon Davidson

Thank you, Ron. I hope that all of you will have a chance to experience a performance in this hall, and that in years to come, you will experience performances in other halls that will be equally as accessible. Our next two speakers are about to take the stage, and one comes all the way from California and is telling me it's about like 6:00 in the morning in her head right now, and the other is from right here in our own backyard in Washington, D.C.

As head of the planning committee for this forum, our first speaker is the founder and director of Other Voices at the Mark Taper Forum in Los Angeles. She is an active director and actress. Our second speaker this morning is the deputy commissioner for disability and income security programs at the Social Security Administration. Her 20 years of experience in policymaking will provide us with insights into some of the federal issues facing people today, and there is word out that she does give a mean power point presentation.

So it's my pleasure to introduce to you Vickie Lewis and Susan Daniels.

SPEAKERS

Victoria Ann Lewis

Good morning. I can tell you I'm a little nervous. This hall is intimidating. Hi. It's exciting for all of us coming together in a community; it's really exciting being out here. I want to thank everybody who put this conference together: Tim and Darrell and Derek, and the Kennedy Center, and Paula Terry, who has single-handedly made the arts accessible working with institutions with disability, where the one person on the front line is doing a lot of work. Perhaps we could give Paula a hand.

I want to start in the middle because I'm tired of starting at the beginning, so I'm going to assume that we all know about Tiny Tim and Richard III and physically challenged is such an extremely aggravating term, a euphemism even worse than disabled. The good news is that we disabled people don't have to be cheerful any more, which makes me feel kind of cheerful, and there is a lot to be cheerful about.

There has been a lot of change. For instance, this hall, with Ron Mace's work, for 200 seats for people with disabilities. The disability rights movement which emerged on the scene 20 years ago made enormous changes for people in the lives of disabilities and we as a group have been pushing the definitions of community, democracy, and freedom in directions that will be useful to all Americans in the 21st Century.

And yet despite all that change, here we are all today asking for more. Because we have an uncomfortable suspicion that the arts, the primary source of vision and re-imagination of human existence, is somehow stalled or stuck when it comes to representing and including our community.

Not many of us have been trained professionally in the arts and very few of us are working at a professional level in the arts. And the depiction of disability in the mass media continues to gravitate between the bitter and the pitiful cripple. So here we are all today trying to figure out how to change.

If it was easy we would have done it alone in our rooms, but we have come here together today to be students of change, to study change together. I want to start in the middle, as a member of the planning committee and to tell you that we are plopping you down right in the middle of our work that started last September. You all received the position papers. I'm sure you read them, and if you haven't, please do. What we all agreed unanimously on the planning committee that one of our problems is a total lack of presence in thought, in theory, in reports, in social sciences, about how people are doing in the arts and how they feel in the arts and what those experiences are.

So these three position papers are a beginning of answering those questions, and we assume you have read them, so that's the bottom line of our discussion, so we can start in the middle and not reinvent the wheel today. So please look at those extraordinary pieces of work.

The other evidence that we are starting in the middle is the fact, and this is amazing, that we are attacking this morning, this very morning, the issue of work disincentives for people with disabilities. This wasn't on the agenda to begin with but it's because the planners kept hearing from us how difficult this problem was for all of us and decided, let's take it on, let's take on our real political social issue and see if we can change things so once somebody gets a job in the arts they are no longer relieved of all of their social assistance.

I want to start in the middle with a few assumptions that we have made and I hope we can kind of all agree on them but I know this is a contentious group so I'm ready to -- throw something I can eat up here, not raw eggs. We assume that there is talent in a population of 50 million, there is a distribution of talent in all of the arts. This goes without saying. What is lacking is the training and the experience to make for competitive careers in the arts. I'm not talking about the stars and I'm not talking about the exceptions. They are important. They are symbolically important. It's symbolically important that Marlee Maitlin gets an academy award, and Phyllis gets a Tony. It's symbolic when Chris Reeves appears, where everybody stood up and cried, at the Oscars. Right. Those are symbolic events that bring our issues to the consciousness.

We are here to do substantive work, to substantively change things, and it's -- we'll probably be symbolic along the way.

The second assumption is that discrimination exists. I saw the 20/20 with John Huckenberry where they had the disabled kid try to get a job and an apartment, and he was refused all of these things, and they sent a nondisabled person in who got the job and got the apartment. The kid's response when he saw the videos was that we don't want to see that. That's really hard to see.

It's almost easier to exist without acknowledging the discrimination that we face but the problem is unless we know what the battle is, we cannot design the tools to fight it. Leslie Fielder said that the physically different, wrote the book Freaks, said that the physically different body in his investigation in all cultures across time is the most stigmatized and the most taboo member of the society.

We are dealing with very deep fears and anxieties when we try to enter the marketplace. The repercussions for that in terms of training and funding of that deep fear are quite extraordinary. 25 years ago when I tried to train as an actress I was told I would never work because of my limp and that they would not train me because I would not have a professional career, and of course I thought those days were over. Right.

Two years ago I met a young actress in Minneapolis who had been told the same thing by a commercial training academy. She would never work. She would be an insult to other people in the class.

Two months ago, I watched two young disabled actresses battle their way into NFA acting programs, hearing the same thing, how will we use them? How will they ever work? Is this legitimate on our part. They both got in. So we are making progress, but there is this assumption and it's based on the medical model which is that we are basically sick, that we are basically patients, permanently sick, and that the best thing that society can do to us is to be nice to us and tolerate us and to be kind to us, certainly not to require the standards of excellence that they require from other artists, and so we get these confusing messages, so if we can clip our toenails on stage, it's just extraordinary. And we get very confused about what excellence is since, you know, basically we can wave, we are considered trained. So there are some real problems in figuring that out.

And the funding role, that's extremely serious, the problems that are keeping us from going forward, not so much in government because government understands the ADA. All the way from the federal, all the way down to county and city, there is some understanding that diversity includes us and that discrimination includes us, and in the private funding world I have been told by leading progressive funding institutions that fund the arts, when an application for disability comes on the table, it's gone. It cannot possibly be real art, it cannot possibly be competitive.

So it's important that we know these are the battles, so that we know where to apply our energy, and please look at the funding paper in your position paper so that we can start there.

Another assumption is that change is not an individual act of will. It is not something that we can climb Mount Everest in our wheelchair. The change comes about collectively and with the addition of social health. We wouldn't be here without 504 and ADA. We would gather together to talk together.

The other thing is that we, another assumption is that we believe change is possible. Quite optimistic group we are. Anton Chekhov, the Russian playwright, said at the turn of the century, another time of great social turmoil, that he developed a belief of progress as a child because he had to, because the difference between the time when they flogged him all the time and the time when they stopped flogging him was enormous.

And I think for many of us here, there are a couple of people over 20, the before and after of our lives, before and after civil rights, there is quite an enormous difference between those times and I think there is very few of us who are nostalgic for the good old days.

Another assumption in this collective work is that we are here today, many of us as artists and many of us as administrators, and our personal careers are put on the back burner and we are here addressing larger issues and larger patterns as 2,000 representatives for thousands of other disabled artists who we are here working for today, coming up with resolutions and recommendations and work that will change not only our careers but thousands of other people, some not even born yet, so just to remember that that's the task.

Another assumption that underlies disability culture is that we want nothing about us without us, that we are looking for structural changes that involve empowerment of artist and art dministrators with disabilities. We are looking for programs that are integrated but in which we have real power. This is not art for us, this is art by us.

I think that's about the assumptions we have, and I just want to caution you on some ways of change that I discovered didn't work real well in my life. As a child I had a bottle of Lourdes water and I sprinkled it on my atrophied leg somehow hoping that the neres would regenerate, the muscles would blossom and I would have a calf again. I'm not a star fish. I don't think miracles are policy. I would counsel against the miraculous as a solution.

And in another area of my life, not disability, but in the rather typically American dysfunctional family I grew up in, I was sure that if I could just get my family to sit down and watch Father Knows Best, everything would be better and we would all start behaving in that fashion.

Well, the final word I want to leave you with is that waiting for the good father is a little bit like waiting for Godot. It's not going to happen. We are the ones who make change.

I want to close with an excerpt because we all are acting artists, close with an interview in oral history from Kitty Cohen for a moment in our history that's very important when making change is that change has happened and how is that change made and how did we do it. So I'm going to ask my colleague Ann Stocking to join me on the stage and I want to take you back in time to a brief moment -- hey, Ann, we are going to go back in time to San Francisco, 1977, and see if any of you remember this particular historical instant. We worked hours on this.

These are the facts. In 1972, Congress passed the rehabilitation act, which was our first Civil Rights Act. By 1977, the regulations were drawn up but HEW Chairman Califano still hadn't signed them. April 4 was our deadline. When nothing happened, we moved into 10 federal buildings across the U.S. In most places the sitins lasted only a few hours but in San Francisco we stayed for 28 days.

Nobody expected it to last that long, I mean, some of us had sleeping bags but even that wasn't official because we couldn't let anybody know we were planning to stay, but 28 days. I'd wake up on the floor, me who had to use a hospital bed at home. I would wake up on this skimpy mattress on the floor and then my attendant would move on to help four other people. Everyone was acting as an attendant, sign language interpreters, deaf people, blind people.

I had never felt so safe and comfortable in my life. Me, well, and powerful. Well, people fell in love. I can name quite a few couples that started in that time. Some of them are still together.

I hated being dirty. There was no shower. Toward the end, Mayor Mosconi sent in this portable shower gizmo. The joy of it. The bathrooms weren't accessible. It took great ingenuity just to go to the john. There were long lines for one stall. And no privacy. People would be lying a foot away from you naked, but nobody cared. Lining up to use the one accessible phone but nobody cared. Two hundred of us there for 35 million other disabled people. That's not an exaggeration. For many of us it is the most important thing we had done with our lives, so much so that after we won the final political crisis was that a whole group refused to leave the building, they didn't want to go back to the real world.

We fiddled with the media, told them we had to clean up the building like the good citizens we were. And gently we coached our comrades through the doors with us and out to the waiting crowd. In the face of ignorance and inhumanity and closed doors, we persisted, along with all our wonderful supporters and we won the victory, by God. Nobody gave us anything.

Thank you.

Dr. Susan M. Daniels

Good morning. Last night I said I was neither a singer nor a dancer but I think I am an actress. I think I'm going to sound enthusiastic and make you all believe we all care about Social Security before 10:00 in the morning. I can't believe I do, but I do, and I'm delighted to have an opportunity this morning to talk to you about our employment strategy.

There are a lot of ways we could pursue this conversation. This morning it will be mostly one way. I'll talk and you listen. I hope that I finish before you do.

We actually have two disability programs. I'm going to quickly tell you about both of them. First is the Social Security disability insurance program. These are for workers who have paid into the Social Security trust fund, FICA, she's a big bank somewhere in the middle of Virginia and she holds it until you need it because you retire, you die and your family has survivor's insurance, or because you need it because you can no longer work. So many of us in this world have paid into FICA or will pay into FICA and be covered by disability insurance.

People who earn very little as a result of disability qualify after they have been out of work for five months and they must have a work impairment. SDI benefits strictly are cash, an average of about $750 a month. After two years, eligibility for Medicare.

And then we have a bunch of work incentives like the trial work period, impairment-related work expenses, extended period of eligibility, and some Medicare buy-ins.

We also have a program called SSI, supplemental surety income, that is not part of the Social Security package, but is a program for people who have very little income and very few resources and have a work impairment. These primarily are folks who have not had an opportunity to have a work life and pay into FICA.

SSI benefits are fairly low, about $484 a month, or if you live in a state with a state supplement as well, access to Medicaid, the state-run health care program for people with limited resources, and a whole bunch of work incentives which I won't go into now.

Who is eligible? For both programs you have to have a mental or physical impairment, cannot do your previous work and cannot engage in any kind of substantial work considering your age, education and work experience. That's about the dumbest part of the presentation. We'll move on now.

We have had some pretty ominous program trends over the last few years, and I'd like to talk about a few of them. The first is that we have had a growing number of people who are on cash benefits and second, a growing number of those people are young. This slide is going to build.

On the bottom you see the number of people on SSDI, on the bottom, and on the top the number of people on SSI. In 1988, we had fewer than 6 million Americans on cash benefits, and today, we have over 10 million. The program costs have gone somewhere from around $25 billion a year in 1987 to over $75 billion a year in 1997, and we project over $90 billion a year by the end of this decade. That's a lot of money.

Our recent beneficiaries are younger. Many more are women. They are poorer, and many more have mental disorders. And yet, in the very same 10 years, when the number of people on our roles have grown dramatically and the expenditures have almost tripled, we have had a giant paradigm shift, the way we think about disability today is dramatically different than the way we thought about it 20 years ago.

When I was growing up with a disability I was the part that was broken. Today we know that disability and handicaps are primarily produced by an inflexible environment. Just being in this hall today is a true, a true example of how access and environment can make people able or disabled. This paradigm shift, this movement from thinking of us as the broken people to looking at the environment, the systems, the supports as the real problem, is a giant leap forward.

We have had medical advances that have made possible many cures and many, many opportunities for people with substantial limitations to be more functional. I for one have a plastic hip on one side that allows me to stand and walk a little. We have had technological advances. Many of us use those technologies. I use an electric scooter and a computer. Many of my colleagues use voice synthesizers or computers that read out, other environmental controls, and many other things in automobiles, etc. Technology has helped us all, not just people with disabilities, be more functional.

And finally, the expectations of people with disabilities themselves have changed. We have seen the institutionalization through the waiver program, people with mental impairments living more in the community. And finally, our civil rights are protected by the Americans with Disabilities Act, the rehabilitation act, and the individuals with disabilities education act.

These changes are dramatic important changes, the way we think about disability, medical treatments and technological advances, the expectations of people themselves with disabilities changing, and finally, the codification of all of these great opportunities into civil rights legislation.

Ladies and gentlemen, these are the very same 10 years where the Social Security disability income programs nearly tripled. Now, here is a problem. With more and more opportunity, more and more people are declaring vocational failure. The complicated question that I ask myself is what the hell's going on here? The GAO, that's a big auditing agency, said that we refer only 4 percent of our people for rehabilitation and only 1 percent ever successfully complete that, and that we can save $3 billion if we just put 1 percent more people back to work.

We did the craziest thing in the world, we went out and talked to our customers, people who are on Social Security disability insurance, or SSI. Here's what they told us. They said it's about health care. It's about services, the way we get them and the choices we have. It's about an all or nothing attitude. And finally, our group said something special. People said to us, Susan, it's about health care more than it is about cash. Sometimes we can replace the cash we get on SSI or SSDI with our own earnings, but we can never replace the community supports and the medical care we get through Medicaid and Medicare. It is unavailable to us at any price. No matter how much we make, we could never buy the kinds of supports that we need that we get through Medicare and Medicaid, so we come through the cash benefits door and stay there because we fear losing it.

They told us services are a mess. Their rehab, school programs, work incentives by Social Security, their community and medical supports, and at the center of it there is no choice really for them. I'm going to talk about two pieces of it.

Choice and the work incentives. We have a whole bunch of work incentives, as you saw in those first two slides. Our customers told us they don't understand the work incentives and they told us neither do we. They get a lot of different answers from us. They call the 1-800 number, they get one answer; they call someplace else, they get a different answer. The answers are inconsistent, and that inconsistency gives us a sense of insecurity.

They want choice at the center of whatever services they use and receive. They don't want somebody else dictating what they are going to do and how they are going to do it. They want to choose the providers of their services and they want to choose the kind of services that they get. They want something that looks more like this, things that kind of fit together, even if not perfectly, that make a whole picture of supports, a basis for their action.

They told us it's all or nothing. You are either on or off Social Security. You are either in or out. You get it all or you get nothing. Disability isn't really like that. I didn't have to hear that myself. I knew that some people can work full time some time and some people can work all the time part-time. But people are various in their ability to work even in their own life and over time and place. And that a system that's inflexible, all or nothing, in or out, yes or no, doesn't meet the realities in disability, in life with a disability and a work life with a disability.

And finally, young people told us the number one handicap I had in my life is the low expectations of the grownups around me. They said that in a hundred different ways. They said my family, my teachers, my counselors, my friends, expect me to be on SSI the rest of my life. And after a while, I began to believe them.

So we put together an employment strategy that has a bunch of pieces, those two I'm not going to talk about on the bottom of the screen, alternate providers and the work world. I'm going to tell you about some demos we are trying and our ticket to independence.

Last year Congress passed something that most consumers, people with disabilities don't know about, Section 4733 of the balanced budget act, it's a Medicaid buy-in, a program states can use to give eligibility to disabled workers who have relatively higher earnings. It's a two-step process of eligibility; first, family's net income and then an individual determination of disability. Now, this is a brand-new tool for people with disabilities to use. And it requires that we do two things. First, that we assure and make sure that our states are adopting this option. If your state has not adopted this option, you can do something. You can visit your state Medicaid director and you can say, how about Section 4733, when is it going to be in our Medicaid state plan.

And when it is in your Medicaid state plan, that means that individuals who are working and have disabilities can buy in to the Medicaid program. This option can be an enormous tool for those of us with disabilities who can work and want to work but may not be able to afford the community supports and health care that comes in the Medicaid program. But in order for it to become a tool, each of us in our states has to be sure that our state is including it and taking advantage of it. There will be greatly increased amounts of income that individuals can have and greater numbers of working disabled people who can use Medicaid.

I wanted to tell you a little bit about our ticket. The ticket to independence is an idea that we had to give our customers more choice. It provides payments to providers based on outcomes of helping our beneficiaries go to work. Now, the most important thing you need to know about the ticket is that the ticket is given to the beneficiary, the person on SSI or SSDI, for them to use to any provider of their choice, a state, agency or private provider, or maybe even a co-op of people with disabilities. If deposited by the beneficiary and accepted by a provider, there is a contract for us to pay the provider some portion of the savings for five years when an individual returns to work.

The system is voluntary, no beneficiary need deposit a ticket, and no one need take one. The general focus is customer service, leveraging innovation, paying for results, and getting the incentives right.

Health care security is the bedrock of return to work. Giving beneficiaries control and flexibility is something people with disabilities want and need. Expanding the public-private partnership, minimizing bureaucratic involvement and maybe even saving some money. At the heart of this is the consensus.

We proposed the ticket. Jeffers and Kennedy are considering one -- many from California and the west coast are working on making Social Security changes happen this year. Bunning and Kennelly proposed a bill, H.R. 3433, that had a ticket for work in it with an external manager and employment networks, and continuing disability reviews put off and phased in over six years. State agencies could participate or choose some other option, and a particular advisory panel made up of people with disabilities. This bill includes work incentives, specialists and a two for one demo, plus Medicare for two more years after you return to work. This passed the House two weeks ago with 410 for and one against.

Now, Kennedy and Jeffers in the Senate are considering some changes, something called an options program for PASS and prescription drugs, work incentive counselors, tickets to work and a two for one demonstration.

We stand at the crossroads. The House has passed a bill overwhelmingly in favor of Social Security work incentive reform and the Senate, Jeffers and Kennedy are now working in considering a bill that should go, we hope, this summer, to the Senate.

We have unfinished business. Health care security is still not all there but we are working on it. We need more flexible benefits for people who can work some, or work some of the time. People with disabilities need job skills, an opportunity to learn, to practice, and to become proficient. We need to clean up our work incentives and make them understandable but at the heart still, we have to fight vigorously with every discrimination in the workplace there is.

Ladies and gentlemen, you can do something now to make the Social Security disability programs better. You can continue to support the legislation that the Congress is considering now and let your Congressman at home know that people with disabilities can work and want to work. Thank you.


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