A Discussion of Helen L. Presented by Ohio SILC on January 22, 1998
Stephen Gold: Before actually getting into the lawsuit, I think you gotta understand some broader concepts that you guys know about, but I want to at least discuss, put on the table, and... I've been asked, and I am available, we are going to do a lot of questions and answers afterwards.
It is absolutely amazing that 8½ years after the ADA was promulgated, 7½ years afterwards, and 20 some, 24 years after the Rehabilitation Act of 1973 was promulgated, it is both amazing and shocking, that... to talk to people with disabilities and to learn how many of them still do not know their rights under either the ADA or the Rehabilitation Act. It is shocking to know how many people with disabilities do not understand that the ADA and the Rehabilitation Act are civil rights statutes, and I really underline civil rights statutes.
It is less shocking and surprising, but it's, nevertheless, quite dismayed... dismaying how many do not know the history of discrimination in this country against people with disabilities. Large numbers of people still do not realize or understand how it is society that has created discrimination, how many of them still blame themselves for how they are discriminated against rather than blaming the discriminators.
You all in this room know, probably better than I, how the press dis-empowers, trivializes, infantilizes people with disabilities and our issues.
Probably the, the number one shock that I have, and maybe some of you share, is realizing how many people with disabilities don't understand how oppressed they are. And until they do, they will not be able to deal with what we're going to talk about today.
Let me read you... this is the part of the thing, normally most of the time you people... you get a test after the speech. I'm going to give it to you at the beginning.
Who said, "That the history of society's formal methods of dealing with people with disabilities can be summed up in two words: Segregation and inequality"? Senator Lowell Weicker in the passage of the ADA.
Who said, "That you know in your hearts that discrimination is based on fear, ignorance, prejudice, and indifference to wrong"? Senator Tom Harkin in the passage of the ADA.
Who said "That this historic civil rights legislation seeks to end the unjustified segregation," – these guys are using words that we don't use, right – "seeks to end the unjustified segregation and exclusion of people with disabilities from the mainstream of American life"?
(Audience member: George Bush.)
Stephen Gold: Close. Attorney General Richard Thornburgh on the passage of the ADA.
Now your answer. And as George Bush said when signing the ADA, "And now I sign legislation which takes a sledgehammer to another wall, one which has for too many generations separated Americans with disabilities from the freedom they could glimpse but not grasp." All still true. Nothing, not much has changed.
Let me tell you who we're going to talk about in absentia today. Her name is Colleen. Since this is being taped, I'm not going to give you her last name. Colleen B. She's 43. She has cerebral palsy. She lives in Dayton. She lives in an ICF/MR [Intermediate Care Facility for the Mentally Retarded] in Dayton. She has lived in this facility for the last 11 years. Her mother is in this room today.
She begs, begs every day that someone in this room listened to President Bush, Attorney General Thornburgh, Senator Harkin, and end her segregation. She has been injured in this facility, they dropped her. She wants out. She has wanted out.
State pays between 150 and 200 bucks a day approximately – we're not sure exactly – approximately, $54,750 a year to $73,000 a year. Not talking chickenfeed anymore, guys? Right we're talking money.
She wants the state to move the money from this pocket, that's the segregated pocket, to this pocket which is in the community. That's all she wants. Now, it shouldn't be that hard if the ADA really means anything in Ohio. If President Bush's words really mean anything 7 years afterwards. Where is the sledgehammer? Right?
I told you at the beginning to read the new book, "Assessing Independent Living Needs of People with Disabilities in Ohio" because it's going to show you, you follow the money and you will see whether the people in Ohio with disabilities are receiving services in segregated or integrated settings.
What I'm saying about Ohio is not different from any other states. We... we took your earlier study in Pennsylvania and without giving you any credit whatsoever did our same thing analyzing our state budget.
And we determined that for every dollar spent in a state institution, only 4 cents was spent in the community for people with disability. So what we're talking about is a simple equation, one dollar equals 4 cents. Segregation trumps integration 100 to 4 every time.
Simple formula. It can be stopped if the people in this room, you know, want to do something about it.
I want you to remember the rest of the talk Colleen. She is alive, she is not dead yet, and she wants out. She is 43, she's a young woman. Eleven years have been lost already – how many more?
Pennsylvania, we brought a lawsuit called Helen L.
Helen L. was brought after years of concurrent political struggle. People trying to push the state to spend the money in a more integrated way, desegregated way.
It's really interesting. We don't use those terms. Those are terms that clearly come out of another civil rights struggle. Right? In terms of people of color, in terms of race in this country. Well, it applies absolutely equally.
Guys, who else is in nursing homes? Just disabled people. Who else is ICF/MR? These are not hotels. One doesn't go to an ICF/MR rather than the Holiday Inn, right? These are institutions, right? These are prisons, right? These are segregated facilities, right? Only for people with disabilities.
Now, when they want to start putting non-disabled people in there, then we can talk about their not being so segregated. But I don't see any non-disabled people getting in line to go in saying, "I want to live in a nursing home," or "I want to live in an ICF/MR." Or, "I want to live in a mental institution"? Or "I want to live in a DD Center." Only people with disabilities.
When the lawsuit was originally brought, it was not brought as an ADA case initially. It was brought on behalf of a woman, Helen L., who had a developmental disability and she was in a state mental institution. Shouldn't have been there, okay? Had been in there for 25 years, okay? She was developmentally disabled.
We brought it under a totally different theory, and once we started getting into it and realized, "Wait a minute. I mean, why do we have to talk about the constitution and the 14th amendment? This is an ADA case." As soon as we amended the complaint, the state said, "We'll get her out and put her in the community."
So then we brought another person from the same state mental institution, another person developmentally disabled, and they got her out. We finally wound up with two people from nursing homes, one of which whose name was Idell, Idell S., became the person who carried the ball all the way through.
Prior to us bringing this lawsuit, Pennsylvania had only a stated funded attendant care program, 100% state funded. And when we would ask them, "Why are you doing that? If you would, if you would apply for a Home in Community-Based Waiver, you could take the same dollars and virtually double the number of people who you are serving." A little less, but almost identical. Two to one, right?
Everyone knows Title XIX works, right? You take the same dollars that you spend on 100% state funded, you put it in Home and Community-Based Waiver. You can put the parameters as you want, and you basically double the program, double the number of people.
They wouldn't do it. There were demonstrations against the governor, there were demonstrations against the Secretary of Welfare. They weren't going to budge. I still today, till today, don't understand why they wouldn't do it without a lawsuit.
We filed the case and the defendants, which is our Department of Public Welfare and does, administers Medical Assistance in Pennsylvania, said, "Wait a minute. There's not even any discrimination going on here because of the following. Discrimination against people with disabilities has to be in comparison to non-disabled, and since there are no non-disabled people living in nursing homes, you know, you can't have discrimination. There isn't discrimination."
By the way, we can laugh about that now in this room. That's what the Federal District Judge ruled, okay? So it's not that funny, okay? That the ADA prohibited discrimination when you were comparing disabled and non-disabled.
And think about it. A person goes to an art museum, a non... a disabled person, and can, you know, get access to it. Non-disabled people can't get access to the art museum, that's discrimination. Movies, think about all the different ways that that occurs.
That is the traditional classical model of discrimination against people with disabilities. It's the model that we employ in terms of race. Racial discrimination is a comparison, right, of blacks, African Americans, versus, you know, non-black African Americans. It's a gender model too. It's women being discriminated against in comparison to men. Right? So, we may laugh about that now, right? And I obviously put, you know... joke about it, you know, who lives in institutions and not a hotel earlier, right. But the district judge agreed with that. That was one argument the state made.
The second argument the state made was, this is not discrimination. All that is doing here is an allocation of money. The Department of Public Welfare argued, "All we're doing is allocating money. We're not intending to discriminate against anyone." Disabled, non-disabled, dah, dah, dah, right? "It's just, this is the way our budget is."
The other, the third argument the defendants made, and, by the way, the state, the district judge accepted the second argument. And there was a Massachusetts case that he relied on that explicitly accepted that an allocation of money is not a form of discrimination. It's just how they're spending their money.
The third argument the DPW raised, the Department of Public Welfare, four times on every page of their briefs was the argument that what the plaintiffs want is deinstitutionalization, right?
And I think it is very important for you to understand that the ADA does not mandate deinstitutionalization. The ADA defines as discrimination unnecessary segregation. And as you all know, the ADA is a much, has been spun into, and it makes some sense, you know, you have to look at everyone individually.
It really is... I mean, two people with MS, you know, one may be able to work and one may not be able to work, right? With the same... two people with polio, one may be able to and one may not, depending on lots of different things, right? So the ADA, you know, requires that the determination of whether segrega... institutionalization is unnecessary and therefore discrimination, you gotta look at the individual.
Remember, the definition says "appropriate... the most integrated setting appropriate to the needs." You gotta look at what the needs are, and you have to figure out whether they can be met in a more integrated setting.
The Department of Justice writes its brief. Great brief, totally supportive. Oral argument occurs.
Now, even though we were bringing a case on the behalf of Idell S., the courtroom had twice as many people with disabilities that are in this room [that] were in that courtroom. You may or may not know that courtrooms are not the most accessible facilities, right. When they build those big benches, these are not movable seats, right? That was very important, I think, right?
Because the signal, I think, that gives the court is that the disabled community understands this is a civil rights statute and expects to be treated with the respect that other civil rights statutes are treated with.
Argument occurs, and it goes pretty well, but nobody gets any signal at all about what's going to happen.
And then several months later, the decision came down. The court ruled that Idell was eligible for, I'm not going to say quote unquote. I'm just going to read the quotes, okay? "That Idell was eligible for attendant care services. However, because of lack of funding, she was placed on a waiting list for that program."
Now, you guys don't have programs in Ohio, do you? You think there are people in the nursing homes and ICF who can't get out because of a waiting list in Ohio? Yes, of course. "Except for access to skilled nursing care, which she neither needs nor wants, Idell S. receives the same kind of services in the nursing home that the Attendant Care Program would provide in the community.
The parties agree that if Idell S. was enrolled in the Attendant Care Program, nursing home care would be inappropriate. Idell S. is not asserting a right to community care of the institutionalization, per se.
She properly concedes that DPW is under no obligation to provide her with any care at all. She is merely claiming that since she qualifies for DPW's Attendant Care Program, DPW's failure to provide those services in the most integrated setting appropriate to her needs violates the ADA." And that's what the case was about.
The court ruled that unnecessary segregation was discrimination without the need to be compared with non-disabled. It accepted the new paradigm for discrimination. It recognized that there were different programs serving people with disabilities, one in the institution, one in the community. Recognized there were different sources of funding. Ohio doesn't have that.
And let me tell you something I strongly advise. That if people in Ohio are going to do something similar, that you should not bring a class action, that you really... one of the things we're trying to do is educate judges, right? Not scare judges. Judges have the same stereotypes, the same misconceptions, the same fears, and it's a lot easier to deal with should Colleen B. be in a institution or not by looking at Colleen and having Colleen testify what... and beg to get out.
And have Colleen say why she wants to be able to go to the movies. And have Colleen say why she misses the mall. Rather than this amorphous thing called a class that the judge never has to realize that there are human beings involved, right? Real, live human beings.
So, if you ask for, the only real good legal advice I can give you today, I think is, and I've told this to other people all over the country, so, is that for the next few years until we get segregation clearly defined as a form of discrimination, right? And until we get people forcing them to move the money from one pocket to the other, bring the individual cases. It's a lot easier for the lawyer and for the judges to deal with.
Voiceover: Questions and Answers section.
Voiceover: How do we know what our rights are under the ADA?
Stephen Gold: Congress made some very critical findings under the ADA, and I hope everyone in this room has next to their bed, you know, if you're religious, a Bible, and whether you're religious or not religious, a copy of the ADA regulations.
Stephen Gold: The ADA handbook is like the Old and New Testament combined.
Stephen Gold: I'm serious! I almost never kid around. It spells out in detail what your rights are. You can get a copy of it from the United States Department of Justice and in an alternate format, dah, dah, dah, dah.
And it's really... It's thick so it scares people. Remember when we were in junior high school? The first thing we did, we got so excited, we got a loose-leaf book, right? In junior high school that had separators. Right?
Some of you are my age, I know that. I know when computers came around, guys. And we had separators. Well, what you do is you put the ADA handbook in a loose-leaf book. They still make them and sell them with separators, they still make them, and you separate them. So you have, you have the statute, you have Title I regulations, Title II, and that... so that when you need something, you don't go to the whole big thing and get scared by its 2½ inches thick. You go to the specific subsection you want, and you look it up.
And I look 'em up and look 'em up and look 'em up. I read the integration mandate under the regulations five times at least before I understood, "Oh, my God. This is quite different from 504, right? And that's what you have to do. In order to be, I think, a good advocate under the ADA with people with disabilities.
You gotta know the ADA regs inside and out. And that's something I don't expect most people with disabilities to know, but I expect everyone in this room to know. All right? It is truly a Bible.
Voiceover: Is HUD required to provide accessible housing?
Stephen Gold: HUD has not, like several other big federal agencies, enforced the civil rights of people with disabilities. When every local town in Ohio that's received federal money from housing under HUD, SEEK, the Community Development Block Grant money, etc., it has been since 1988 has supposed to have been building 5% of houses accessible to people with disabilities.
Everyone knows that, right? What the local law is? The law, the Rehabilitation Act requires that HUD and promulgated regulations to implement said since 1988, and I got it right this time, not 90s. Since 1988, every time your local government, city, any kind of public government, received money from HUD to build or alter and renovate houses, whether it's... any kind of housing, public housing or nonpublic housing, 5% of those houses should have been built accessible to people with disability.
Voiceover: How can a single parent meet welfare to work regulations and keep their child from being institutionalized?
Stephen Gold: If the state wants to give that, give that person an attendant, to pay someone to be the kid's attendant while the mother goes out and works, that's fine. Absolutely fine.
And then they may be able to force the mother to work, but they can't say to the mother, "We're not giving you attendant. Your kid can stay at home or be institutionalized and you gotta work."
I think, under the regulations, a case that we brought, we don't like to admit, and lost, is called Easley versus something. Ms. Easley was a woman who... was a young woman who was in a car accident at age 22 and had severe cognitive and communication losses and needed attendant care services.
But one of the conditions in Pennsylvania, ludicrous as it may sound, is that in order to get attendant care services, you must be able to hire and fire your own attendant, as a condition of receiving attendant care services.
And we said, "This is crazy. This woman needs an attendant, and she may not be able to hire and fire, but someone else might be able to for her." We lost that as a factual matter, but the court clearly held, as a legal principle that making reasonable accommodations and reasonable modification of state policies and plans is required under the ADA.
Voiceover: Can you find an example of non-compliance with the ADA that was not tied to economics?
Stephen Gold: The ADA requires that bus stops be called out. Why? Because people who are blind need points of reference to know where the bus is, right? This doesn't require any capital expenditure. This doesn't require any technology.
It's one thing to tell me we got old buses in Philadelphia and the lifts keep breaking. By the way, I took that excuse for a number of years until we filed for contempt of court and we've gotten a decree that says for every bus lift that's broken, you don't put it out in the street. And if you do, you pay $500 a day per bus, right? We have made in one month $10,500.
You should see the chart. It's amazing how culture changes when they gotta pay money. Chart's going like this. Buses aren't going out anymore. They can, all of a sudden, they can repair the lifts, right? But that's a technological issue that I was suckered into for a number of years.
Calling out stops? Guys, the only reason they don't do it is they don't want to. They don't want to. The value of life of a person who is blind or disabled is not important to them. That's a cultural thing.
Voiceover: What's an example of reasonable accommodation in the work place?
Stephen Gold: The most recent one that's occurring was this golfer last week. I mean, in the PGA, you know, somehow thinking. You are familiar with what I'm talking about, right, in terms of this? The PGA won't let this guy who has a disability ride a cart from one hole to the other.
Like, come on, guys. What... I mean this... this is how many years after the ADA was passed? And to hear all these other golfers talking about how stamina is a part of the game. I thought the game was hitting the ball, right? And, and I gotta tell you when the press asked me, I said, "Well if stamina is part of the game, why don't they make these golfers carry their own golf bags? Why... Why don't they make them run to the ball?" I mean, it's that.... But I mean, just think about that, that this guy wins a tournament and people are giving him grief.
Voiceover: Do you believe necessary segregation exists?
Stephen Gold: Steve Gold doesn't and let me tell you why, right, and I'm not talking the ADA, I'm just talking unnecessary segregation. Because I'm always asked, "What about people with Alzheimer's? Wait, I mean, come on." I said, "Wait a minute. One of my favorite presidents now has Alzheimer's and I don't see Mrs. Reagan putting him in a nursing home. She's keeping him at home." The answer is no. I mean, if you have enough money, the answer is no, right? Now, I understand we don't have that kind of money. But, as a theoretical matter, no
Voiceover: Is it true that nursing homes are necessary evils?
Stephen Gold: Let me be very, very blunt about nursing homes, right? We all know why the nursing... why there are nursing homes, right? Let's assume for the moment I could do... what the answer is it's a $63 billion for profit business. You have to look in your state what your nursing home industry has done in terms of giving money, political contributions to your elected officials. Follow the money, guys. Find out how much they gave to the governor, to the president of the senate, dah, dah, dah, dah campaigns. And you will see why there's that. But the... the... the. Just follow the money. You will find out why.
Voiceover: What do you do when reports say that people are happy in nursing homes?
Stephen Gold: The national survey about people in nursing homes is that people want out. Like the one in the New York Times the last two weeks or so, three weeks ago, I don't remember. Big national survey. Huge percentage of people want to live in their homes.
Voiceover: Are people with disabilities as aggressive in pursuing their civil rights as other minorities are?
Stephen Gold: That's a cultural thing. The same thing... Our country has had a long glorious history on race doing that way, in gender discrimination. Can you imagine the colleges in this country seven years after Title IX was passed saying, "Well, girls, girls, I know we got a football team at the University of Ohio. I know we got a baseball team. What do you mean, you want equal sports? Why don't you just, you know, we'll give you jump ropes. We'll give you, you, know, we'll give you tiddlywinks." The women in this room and at University of... Ohio University would have taken guns and rightfully they should have.
Voiceover: How to we motivate Independent Living Centers to focus on deinstitutionalization?
Stephen Gold: You guys are going to get... eliminate the waiting list on the Home and Community-Based waiver. You're going to get into every nursing home. You're going to get into every ICF/MR. We should stop being hypocrites.
We point our fingers at the state public officials not doing their jobs. How about pointing 'em at us, right? Hook the money to the number of people we get out.
You know what? Priorities will follow the money, right? It's not just where the state is spending its money, right? It's where we're putting staff people in the Independent Living Centers, right?
I don't hear an excuse we don't have staff. Of course you have staff. You decide to put the staff in this pocket rather than this pocket. Just like the state. These are choices we make.
They all have consequences in terms of segregation. If you want to do it, it can be done. So the challenge is start now keeping track and compete. I mean, I don't have the authority, obviously, and Woody doesn't have the authority to hold the money one way or another, but let's start keeping track of it. Do a chart.
How many people – list every Independent Living Center two columns – did we get out? Did we prevent from going in? That should be part of every meeting. That should be the first item. And then you see. Wait a minute, why did this Independent Living Center for three months now not get anybody out? And had how many people go in? You can do it.