List of Audio sections for ILRU Online Course 1: Disability Policy and the Olmstead Decision

• [No audio for Session 1)
• Course 1, Session 2: “History and the Old Paradigm” -- Bobby Silverstein
• Course 1, Session 3: “New Paradigm and the Core Precept” -- Bobby Silverstein
• Course 1, Session 4: “Goal One: Equality of Opportunity”-- Bobby Silverstein
• Course 1, Session 5: “Goal Two: Full Participation”-- Bobby Silverstein
• Course 1, Session 6: “Goal Three: Independent Living”-- Bobby Silverstein
• Course 1, Session 7: “Goal Four: Economic Self Sufficiency”-- Bobby Silverstein
• Course 1, Session 8: “Methods of Administration”-- Bobby Silverstein
• Course 1, Session 9: “Interview with Lois & Elaine”-- Richard Petty, Lois Curtis, Elaine Wilson
• [No audio for session 10)
• Course 1, Session 11: “Vision for the Future”-- Bob Williams
• [No audio for session 12]
• Course 1, Session 13: “Where I Got Started”-- Mike Oxford
• [No audio for sessions 14 or 15]

Course 1, Session 2
“History and the Old Paradigm” (8 minutes)
Bobby Silverstein

One of the things that I did when I left Capitol Hill is I looked across the various pieces of legislation, ranging from the ADA to IDEA to the Rehab Act to the Developmental Disabilities Act to the TEC Act and said, are there a common set of principles and themes and values, and can we use that framework for our advocacy. So that whether we are doing Olmstead or healthcare or child care or welfare or job training or education, is there a lens, a guidepost, a set of principles, a checklist, an audit, that we as advocates, as change agents, can use to see if our advocacy is touching on the various policies and what I call “methods of administration” that are necessary, so that at the end of the day, the change in policy that we’re all advocating for might actually be implemented.

Let me start, then, by going back in time. When we talk about disability policy, we cannot just start with where we are today, we have to go back in history, we have to understand the historical context for whatever it is that we’re doing. In this case, if our advocacy is dealing with Olmstead, community based services and supports, we have to not start with the present, because we need to understand why the systems and the policies are what they are before we start figuring out what changes we need to make, and so we have to start with how we as a nation, in general, and then you specifically, in terms of the specific issues that you will be dealing with, how the systems have dealt with people with disabilities. The old paradigm, the old approach, adopted by policy makers and many professionals was the notion that a person with a disability had a defect. So people with disabilities were defective and in need of fixing, and if we couldn’t fix them, we excluded them, we segregated them, we denied them services. Out-of-sight, out-of-mind was the norm. That was the public policy approach to people with disabilities. Let me give you a couple of quick examples. Chicago, up until 1974, had the following ordinance on the book, “No person who was diseased, maimed, or in any way deformed, so as to be an unsightly or disgusting object, is to be allowed in or on the public ways or in other places in the city. If this person “exposed himself to public view, he or she would be subject to a fine for each offense.” This was an example of an ugly law.

Public education, folks here from Maine? Anybody here from Maine? Up until 1970 you had on your book legislation that said if it is inexpedient to serve a child with a disability, the public school system had the discretion, the authority, to totally exclude that child. Let me read to you briefly from a Wisconsin Supreme Court Case. The issue in this case was whether or not a child could be totally excluded from public education based on the state’s statutes dealing with education. “Merit has been a crippled and defective child, this is the language of the court, Merit has been a crippled and defective child since his birth, being afflicted with a form of paralysis which affects his whole physical and nervous makeup. He has not the normal use and control of his voice, hands, feet and body, by reason of said paralysis. His vocal chords are afflicted. The school board claimed that his physical condition and ailment produces “a depressing and nauseating effect on the teachers and school children. That by reason of his physical condition, he takes up an undue portion of the teacher’s time and attention, distracts the attention of other pupils, and interferes generally with the discipline and progress of the school.””

The Supreme Court and the State of Wisconsin concluded that this child must be or may be excluded from public education because “his presence is harmful to the best interest of the school. Individual rights must be subordinated to the general welfare.”

How about institutions in your state? The question is, have you researched their history? Do you understand why and how they were developed and who was behind it. Well in many states, institutions developed because of the work of commissions, made up by policy makers and professionals, and in some states they were called “The Commission to Address Feeble Mindedness and the Menace of Feeble Mindedness.” So if you look at the literature, and you look at what folks were saying, not that long ago, you would hear phrases like this in the literature, the feeble minded are “a menace to society and civilization, responsible in large degree for many, if not all, of our social problems.”

Why am I talking about all this? Well one of the reasons is to set how important it is to understand a historical context and understand a mindset, and I’m also sharing thoughts like this because this is not yesterday, this is still today in many systems. But the point of all this discussion is, when you’re doing advocacy, you don’t start in terms of policy advocacy, you don’t start with today, you have to go back in history in terms of findings, and share and explain the “why”, the historical context is where you need to start in terms of your advocacy, and that requires the research necessary to figure out in your state, what is the history of the institution, but it is also the mindset of policy makers, and staff, and professionals who are not working day-in and day-out on disability policy.
END OF SESSION 2 AUDIO

Course 1, Session 3
“New Paradigm and the Core Precept”
Bobby Silverstein

That’s the old paradigm. What is the new paradigm of disability policy? If you look at all the legislation that we have passed recently, and you look at the first sections of the laws, you will find what I’m about to say actually in the legislation. We have rejected the old paradigm that people with disabilities are defective and in need of fixing, and replaced that approach with a notion that disability is a natural and normal part of the human experience, that in no way diminishes a persons right to fully participate in all aspects of society. And furthermore, the approach is not to fix the individual, but to fix the environment in which the individual functions. That is the core precept of disability policy in the post-ADA era, and we need to be able to communicate that to the policy makers, to the folks that we are dealing with. Remember, in many of the systems that you are going to be changing or trying to change and work, and people within those systems that you work with, they don’t know disability policy. They do generic systems for people with and without disabilities. You cannot take for granted that (A) they understand history or (B) they understand this core value, and as advocates, our responsibility is not to assume that they do, but to make sure that these basic values, these basic premises, are understood when the meetings occur, when the vision statements are decided on, when the general approaches are reviewed. So the first part of the checklist is, do we know history? The second is, the core precept. Are we addressing that core precept someway in our systems change efforts?

Now one of the goals of disability policy, again these are not my goals, these are the goals of disability policy that are articulated in the American’s With Disabilities Act. These are not the goals of the ADA, these are the goals of all of disability policy. Congress just happened to use the ADA as the vehicle for articulating these goals. There are four goals: The first is equality of opportunity, the second is full participation, the third is independent living, and the fourth is economic self-sufficiency. And again, the purpose of this presentation is to say OK, whatever advocacy we are doing, are we addressing each of these four issues in our policy change efforts?
END OF SESSION 3 AUDIO

Course 1, Session 4
“Goal One: Equality of Opportunity”
Bobby Silverstein

Equality of opportunity has three components: The first component is individualization, making sure that the policy that you’re trying to get adopted or modified is based on the premise of individualization, case-by-case determination based on fact, and based on objective evidence, not based on stereotypes or generalizations or prejudices or pernicious mythologies. What are the facts? What is the objective evidence? Evidence provided by the individual, by the family, by professionals, in different environments, not just the professional’s office but where the individual functions, pulled together in a plan, and that’s the essence of individualization. Again you’re saying of course, so far you haven’t said anything I don’t know and already do. That’s the whole point. What I’m trying to do is have a conceptual framework to make sure each of the points that we know about is addressed. So this is the next issue, is our system supporting individualization is the question. Are we making sure that decisions are made based on the needs of the individual, rather than the needs of the system?

The second component of equality of opportunity is the notion of genuine, effective, and meaningful opportunity to participate. This is absolutely critical in terms of disability policy. There is nothing, in my opinion, that is more important, and this is the part that is so misunderstood by people who don’t deal with disability policy on a day-to-day basis. And part of our problem, as advocates, is too often we talk and use jargon to explain this notion. And you can’t use disability jargon with people, general policy makers, who don’t deal with disability on a day-to-day basis. You throw out phrases like “reasonable accommodation” and “program accessibility” and what do people think, they think special treatment, they think excuses, extra stuff, because they don’t quite understand this terminology, but that’s the way they think about it. That’s why I don’t use those phrases. I use phrases like “effective and meaningful opportunity,” which do not have the disability, it’s not disability jargon, it’s generic, and so this next question on the checklist is, in the policy that you’re trying to achieve, in terms of the change, does it ensure meaningful and effective opportunity for all, not just the average person.

The third component then, now, of equality of opportunity, is the concept of inclusion, most integrated setting appropriate. Should a person with a disability give up his or her right to interact with non-disabled persons, to go to church, to go to the local store, to go to the local cinema, to go order a pizza? Should an individual give up those rights in order to get a public benefit? And the answer is no. Unnecessary, unjustified isolation and segregation is inappropriate. One should not have to be segregated, separated, in order to receive a public benefit.
END OF SESSION 4 AUDIO

Course 1, Session 5
“Goal Two: Full Participation”
Bobby Silverstein

Lets go to the second goal now. The second goal of disability policy is full participation. And we, in the community, talk about empowerment, and self-determination, and self-advocacy, and informed choice as a number of different phrases for describing this concept. And it has two components: one is empowerment and informed choice, with respect to issues affecting individuals, to be involved with and to direct individual decisions affecting services and supports, and another aspects. And then it has a second component, the systems component. Are people with disabilities involved in the policy level? In the evaluation level? In the policy decisions? And again, of course, what is he saying, again nothing special, just to make sure, checklist, when your states are making changes and developing policies and practices and procedures, what specifically are they doing to ensure and empower people in the decisions affecting their lives, and what are they doing in terms of the structure of the policy making process? Whether it’s joint sign-off by people with disabilities in state plans, or it’s active involvement or 50%, whatever it is, there are different particular strategies for ensuring involvement at the policy making level. The question is, in the checklist, to make sure that is a key part of your advocacy.
END OF SESSION 5 AUDIO

Course 1, Session 6
“Goal Three: Independent Living”
Bobby Silverstein

The third component or the third goal of disability policy is the goal of independent living. We are now saying, as a matter of public policy, and Congress is recognizing that independent living is a legitimate outcome of our public policy, and so when one sets up the objectives for the policy, independent living is a recognized legitimate outcome. And to get there, what does it take? It takes support for independent living skills. It takes support for ongoing services and supports such as personal assistant services, assistive technology. It may require cash assistance.
END OF SESSION 6 AUDIO

Course 1, Session 7
“Goal Four: Economic Self Sufficiency”
Bobby Silverstein

The fourth goal of disability policy is economic self-sufficiency, and here again, we are recognizing employment, work, productivity, as an absolute legitimate outcome of what it is that we are doing in the policy arena. Work is an essential part, for many people with disabilities, of living in the community. And what does it take? It takes systems to provide the services necessary, education systems, employment systems, to achieve that end. It takes cash assistance for some, it takes a system of cash assistance that includes work incentives. We have to be asking those questions if economic self-sufficiency is one of the four goals of disability policy.
END OF SESSION 7 AUDIO

Course 1, Session 8
“Methods of Administration”
Bobby Silverstein

Now you could say OK, that’s it, we went through the basic precept, basic value, talked about the four goals, you talked about most of the key policies, thank you for sharing, let’s go home, and I’ll say no, that’s only half, in terms of the overarching framework. Because what we’re really interested in, after all, is implementation, not some theoretical statement of policy. Policy is critical, that guides behavior, but that’s not all there is, how do we maximize the likelihood that these policies will be implemented? And there’s another set of things we can learn from the ADA, and IDA, and Rehab, looking across the board horizontally, in terms of how to maximize or increase the likelihood of implementation, and I call these methods of administration. And where do you start, you start with State Plans or you start with Olmstead plans. What’s in that plan? Does that plan recognize the history, the problems, the overarching needs of people with disabilities? Is it responding to their needs or is it responding to a bureaucrat? or historical administrative structures? That plan is critical, and that’s why you’re here. Does it have the correct values, is it comprehensive, does it address all these four goals? And does it do it in a systematic way? Does it have the specificity that is necessary to achieve the objectives?
END OF SESSION 8 AUDIO

Course 1, Session 9
“Interview with Lois & Elaine”
Richard Petty, Lois Curtis, Elaine Wilson

We’re talking with Lois Curtis and Elaine Wilson. And Elaine, what is it like to live in your own home now?
Elaine: To live in my own home, well I feel very grateful to all the people who helped me to get my own home and I feel very good about my home. I have a great life and I can make my own decisions. And I can handle my own business, and I feel good about myself.
How long did you live in the institution?
Elaine: Oh, I was in there 37 times. I was in the Georgia Regional Center 37 times. But that once when my mother called Sue, that was the best call she ever made. Because she filed a complaint, Sue did.
How is it different?
Elaine: How is different? Well, I can go out when I want to. I can date when I want to. I can go home when I want to. I can go out to eat with my workers when I want to. And I can go to dialysis, and that’s about it.
How does your worker help you?
Elaine: How does she help me? She was the one that got this home… Angela and Harriet, and Nancy was the one, and Wendy was the one that got this home for me. And this is really, the only person that lives there is me and Nancy. And the way it was different is when I first went there, I didn’t think it was going to work out, I thought we were going to have to move me again. But I was wrong. It worked out. And now I’m really and truly happy the way my life is now. That’s the difference.
That’s a big difference.
Lois, how long were you in the institution? How many times did you go in, do you remember?
Lois: 30… 35 years. I was in the hospital.
And do live in your own house now?
Lois: I love it here. I like it a lot. It’s nice. You can eat cook, eat breakfast in the morning. Get up and go around. I smoke a cigarette in the morning. And then I do my other stuff. And then I say … “where’s my tennis shoes … I got to play basketball. And then after lunch, … we do the test, and then come back here, and then go to the store. Go the store on Friday, and we watch a movie… do that after lunch. We go to the gas station across the street. This month’s program…”
How does Wendy help you?
Lois: She helps me most of the time, with the problems I’ve been feeling. I’ll go the night and … got sick one day… and she said she was going to call the police on me. And then, and then I told I was sorry at Sandra. That I didn’t mean to do this. And I said I wanted to move out someday…. And I told her I wanted to stop smoking, for my life. Lay it down and stop smoking.”

Elaine, what do you want to do now?
Elaine: Well, I’m going to be going to a job-training program.
What kind of job are you thinking about?
Elaine: Well, they prepare you for a job… and they train you for a job. And they ask you what job you want. And I want housekeeping. That’s what I want.
Have you ever worked before?
Elaine: uhhuh, I worked in a nursing home as a kitchen helper. And I worked there eight years.
Was that while you were in the institution?
Elaine: No, I was out of the institution. I was out, I had my own apartment.
When you first met Sue, do you remember that?
Elaine: Yeah, I remember that.
What did you tell her when you first met her?
Elaine: She asked me questions, and I answered them. And I shared with her, how they were wanting to discharge me to the streets. To make me homeless, put me in a homeless shelter.
They were going to put you in a homeless shelter?
Elaine: Uh-hu. And then one time they were going to release me to the streets. And Sue stopped it.
Is there anything that either of you would like to say?
Elaine: I would tell them to get a lawyer, and if they can’t pay the lawyer, then ask if the state could pay the lawyer, and I would also tell them that it’s a long process, a real real long process. I would also tell them, it’s hard to sue a hospital, but, but, you can do it. Because I did it and Lois did.
END OF SESSION 9 AUDIO

Course 1, Session 11
“Vision for the Future”
Bob Williams

Some describe the ADA and the Medicaid program ____ like two great polar opposites which when they collided ____ Olmstead produced earthquakes of seismic proportions. Perhaps this isn’t so, but I think we also must recognize that like after any quake, what we are left with is a changed landscape that we have the opportunity and responsibility to make better plans before. Those of us in the baby boom generation, however, pose a far more immediate political challenge for governor’s as well as other state and federal policy makers. This most often gets framed in being about the need to make such services responsive to the needs of families who provide 80% of the personal assistance people with significant disabilities receive, while this is crucial, casting the issue in this light, obscures a larger truth that as those of us who are baby boomers begin to reach 65, our expectations for how we want to live out the rest of our lives with or without disabilities will be increasingly different and knowing ____ much more in your ____than previous generations of older Americans. This is truly the sleeping giant, for if we can figure out how best to tap into it and channel it, I believe there is a large reservoir of interest and support on the part of baby boomers to make sleeping reforms to the way we offer and pay for long-term services in this country on the scale which most probably have never dreamt possible. This seems particularly true with women in the so-called sandwich generation who are caring for their own families as well as their aging parents and their in-laws.
END OF SESSION 11 AUDIO

Course 1, Session 13
“Where I Got Started”
Mike Oxford

And actually where I got started, way back in the old days, I rode my horse around to Abilene, Kansas, you know basically I was in Abilene, Kansas, a little town, and I was involved with a project that was called the Apartment Support Program and again kind of an old, kinda hoakie name, but this was in the early 80’s you know, and this was when our state, we had very large state hospitals and a bunch of large bed intermediate care facilities that were private, and people were moving out. I mean we had thousands and thousands of people and so throughout the 80’s really was a time when everyone was realizing that that many people didn’t need to be in these places and it was kind of in keeping with the national movement to down size and deinstitutionalize, and basically I was working directly with people, hands-on, attendant type services, skills building, budgeting, shopping, learning your way around town, all the kinds of things that are needed with folks that were primarily coming out of the state hospitals, and I thought that’s what independent living was, and I thought that’s primarily what centers did I mean because that’s all I did, and you know I found out something different later. But that’s really how I got my start, and the issues are very much the same that we are hearing already, you know, even back then. Winfield State Hospital was the biggest and worst one, it’s a gothic horror on a 40-acre campus. It was originally a farm and so the patients there had to go and do farm labor and raise their own food and they sold it. I mean, it just kind of a very typical kind of situation and so really ran into just all sorts of different kinds of people with different disabilities. Not everyone had a cognitive disability in these places and figured out how to support people in the community through peer work, skills building, as well as hands-on services and we primarily used, I talked about we had the one waiver yesterday, we had habilitation in there and it did serve people with developmental disabilities so that is how we got started and that has been a very strong interest of mine for over 17 years now in terms of doing that and so again, as we think of what we are facing now, how are we going to do this, what are the costs going to be, don’t people need 24 hour supervision. I mean I worked with the folks out of the state hospitals and we worked through all those same issues. I mean with Winfield again, it would be primarily economic activity in a four county area. So talk of closing the hospitals we got all the economic stuff, it’s going to throw hundreds of people out of work, you know this was the big multiplier in the counties, you are not going to be selling washing machines and cars and things like that and we are still facing that now. I mean one of the real issues, for instance, with Laguna Honda, the big nursing home they are planning on rebuilding in San Francisco, is wages and benefits for workers and economic development issues, and those are certainly before us today. In terms of what we have been doing at the center, just so you know too, and those of you from Isle Seas is that a while back some members of Adapt and myself mainly, and I think Mike, I don’t know Bob, we approached John Nelson, then the head of RSA, about lets add getting people out of institutions or preventing people from going in to our list of services on our 704 reports from centers, for those of you that know the 704 and we have to report numbers served based on service categories and there is that long list, the reason that the deinstitutionalization or prevention services are on there is because we asked them to put it on there, and it wasn’t regulatory or statutory, it’s a reporting thing and so we got that done. The next phase that Adapt is interested in as well as Nickel very much I am also the President of the National Council on Independent Living and we are looking at the Rehabilitation Act next reauthorization, do we need to add a fifth core service? Which would be this, prevention of institutionalization or deinstitutionalization and either have a fifth core service that we would have to provide instead of the four or replace perhaps information and referral with this, because lets face it you guys, you know the I&R, I mean the phone rings, you pick it up, you tell them, you know it’s not, maybe not as important given the level of need that people have now to answer the phone. I know in my community we have like 15 different agencies, that’s all they do is I&R, and as Bob was saying, I&R is great to get information but in the end someone has to accept the referral and do something with it. It’s very frustrating for me and for everybody else, right, that all you get is these referrals, oh call so and so, no call Richard, you know, no call David, oh you need to call them and them and them and someone has to do something OK, you get in this ring around the rosy with referrals and everyone does it and, you know, it’s just frustration so thinking ahead for those of you that are interested in independent living centers and ILC’s that is going to be something that is going to be heavily debated and discussed and I can tell you that I am pretty clear at this point that I think it’s a good idea that centers need to be getting involved in this area big time, that it is a huge national need and certainly at the heart of independent living because you know something, Air Carrier Access Act, 504, ADA, IDEA, all these laws and civil rights and so on that we have, really don’t mean much if you are just going to go to the institution. Another way to look at it is why are we having a free and appropriate public education for our kid so when they turn 22 and get booted out of public school they go where, the institution, and you know, but there is a lot of dynamics involved in there but as a national effort it doesn’t make sense to educate everybody and then send them off to a segregated, non-successful, non-employable environment.
END OF SESSION 13 AUDIO