Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging

Okay, so before I get started today,mI want to clarify that I will be using a lot of language, and sometimes a little sarcastically, that comes from our history.

It is not language that I endorse or I use today, but I think it's part of our understanding of how we got from where we are to, where we were to where we are today, and that we must always be aware of it because we could slip back or somebody could want us to go back. So when you hear words like idiot or imbecile or feeble-minded or handicap, understand those were the terms of art in law and in court decisions, and they are written. I didn't write them, but they are part of our history and we have to accept it and go forward.

Good day, my name is Allan Bergman and I am pleased to have the opportunity to present to you "Background on the Evolution of Federal Disability Policy."

Many of you are familiar with the "Evolution of Disability History," this is a compatible piece, a little bit of overlap, on the policies of the United States of America that have evolved from a very deficit moral medical model, all stereotypes to an alignment today that is absolutely amazing with everything on individual, person-centered, disability justice, and flipping that deficit model to based on strengths, preferences, interests and informed choices leading to valued outcomes and belonging.

And that is a wonderful journey that we are going to take in this series.

So first off, let's talk about what is public policy?

We throw that around a lot.

And unfortunately, if you look in the dictionary or the textbooks, there are many definitions. But generally speaking, it's defined as a system of laws, regulatory measures, courses of action and funding priorities.

Where do we spend our money? As one of my colleagues taught me many decades ago, the proof of the pudding is in your budget. The budget tells what you're doing. The words may mean absolutely nothing about a given topic promulgated by a government entity or its representatives. It's whatever a government chooses to do or even not to do.

So says Thomas Dye.

And more important for those of us in the advocacy community, it's political decisions for implementing programs to achieve societal goals. Those societal goals have changed and they may continue to change.

Another one from Mr. Cochran:

Public policy is the outcome of the struggle in government over who gets what. It's sort of dividing the pie because there's never enough allegedly for everybody, so we have to take a look and set priorities.

And lastly, another one:

Public policy refers to the theory and practice of government, the institutional
agenda-setting of society; laws, plans, actions and behaviors that it authorizes."

That's what we're talking about.

So in simple terms, getting out of the textbooks, it's our laws or statutes which are created, we have three levels of government, by the legislative branch.

I'm gonna be focusing on federal, and you will see some of the slides having USC, that's United States Code, when the law gets put into the Code; and also a Public Law Number like 94-142, one of our big ones. That means it's the 94th session of Congress, the 142nd bill that was signed into law in that session of Congress. We are finishing up in 2022, the 116th session of Congress, and next January we will start the 117th.

The second area of law is regulations or rules. Those come out by the administrative agencies. And again, the citations you will see are CFR, which means Code of Federal Regulations.

And our third branch of government is the courts. And the decisions by courts and judges also play a role in our public policy, as you will see, such as in the Olmstead case versus L.C., Lois Curtis. And that's referred to in the court rulings as 527 U.S. 581. And that was in 1999.

Here is the critical piece from my perspective, All policies are based on values of society. And as you will see, values change over time and they can come and go based on our advocacy.

Most of our federal policies can be amended or repealed at any time, which requires our eternal vigilance. As an advocate and disability policy, we never can rest too long. We're entitled to take a little break but then we have to persevere.

And as I always teach, advocacy is not an observational sport, it is a participatory sport. We must be involved. We just can't read the stuff that comes out on action alerts and say, "Okay, well that's nice. Somebody will take care of it." No, we all have to take care of it.

So we all must participate. And from a a history perspective, Winston Churchill said it all, "Those that failed to learn from history are doomed to repeat it." Or as my mentor, the late Dr. Burton Blatt, Center on Human Policy at Syracuse said, "Know your history, know your history, know your history." History can be cyclical or cyclical, depending how you wanna pronounce that, and repetitive.

And I always say, "Keep your rear view mirror wide open because somebody will be attempting to take back something that we have worked hard to gain and we can never drop our guard." So we have to know where we came from and how we have to move forward. So, we have a very interesting history.

As best I can tell, looking through all the various pieces that I could find, the first dotted line in our history in government was in 1817 when the American School for the Deaf opened in the state of Connecticut. And it's still there. In fact, I lived not too far from it when I grew up in Hartford, West Hartford, Connecticut.

So that was the beginning.

And then in the developmental disability world, at that time, not called that, in 1848 in Massachusetts, we opened the first school,

I want you to hear these words, 'cause words are powerful and valuable, feeble-minded.

The School for the Feeble-Minded.

Idiot, imbecile, moron, all those wonderful terms were the terms of art.

And that school was opened with the best of intentions.

A concept brought over from Germany that we would have these farm schools and the kids would come in on Sunday or Monday morning, they would have residential school, they would learn how to do agrarian work and they would go home for the weekend and then go back to the school.

Within six months, it became a custodial institution. It did not work. And I'm sorry to say, we seem to not learn from our history.

There are some things going on in this country today in terms of farms for people on the autism spectrum that seem to be popping up in various places. They're segregated, they will not work, and they certainly won't get any federal money. But that's what some people still think they want.

So that cornerstone was brought here by a gentleman named Elias Howe. He was a very smart man. And only 18 years later, when he laid the cornerstone for the School for the Blind in Batavia, New York, he made the following statement as part of a long statement:

As much as may be, surround insane and excitable persons with sane people and ordinary influences; vicious children with virtuous people and virtuous influences; blind children with those who see; mute children with those who speak and the like.

Ladies and gentlemen, Mr Howe coined inclusion in 1866! That's a long time ago. And we are still debating its implementation in 2022.

He saw it. He saw what he had done and he suggested we not do it. Unfortunately after that, every state built more, more than one state institution for then the feeble-minded, then the mentally retarded. Now people with developmental disabilities, and we'll get to that later; what we still have left in this country. So Mr. Howe was way ahead of his time.

That's one of the problems sometimes with advocacy, is it is such a stretch for people, they can't get their arms around it, and they thought he was just weird. But he had it nailed over 150 years ago. And we didn't learn.

In 1907 in this country, we passed an Immigration Act. And listen to this one: People found by an examining surgeon to be mentally or physically defective, whatever the heck that means, affecting their ability to earn a living, were not permitted to enter this country, often even with family members because there was a fear of making the United States a country of defectives.

Folks, that's just a little over a hundred years ago. In a historian's perspective, that's a blink. And guess what?

We saw that recently in some of the charge rules and the anti-immigration in this country in the last decade, attempting again to prevent anyone with a disability, physical or intellectual or sensory or whatever from entering this country to drain our resources.

Still a very negative model in some people's thinking. And that's in the last 10 years. So we've still got a lot of work to do because what we're talking about here, and this is hard work, is culture. Culture is learned attitudes, learned values, learned behaviors.

Today we have some new language for racism, we call it implicit bias. There's a lot of ableism or implicit bias about people with disabilities. And it's learned.

I share with you my own experience. I grew up in Hartford, in West Hartford, Connecticut, and I went to public school. I think I remember once seeing somebody with a white cane and I grasped that that person didn't see so well, probably was blind or legally blind. Other than that, I had no contact with people with disabilities growing up.

But what I did learn culturally, on the other side of town, there was a school that we referred to as the dummy school. I don't know who went there and I didn't find out even where it was till much later in life.

But what I and my friends did, and I'll speak for all of us, we created a rather grotesque image of who they must be because if they were like us, they'd be in school with us.

That's cultural. I wasn't taught to be a bigot, I wasn't taught to be an ableist, I wasn't taught to pick on them, but I learned culturally they were different. They were separate, they couldn't be with us.

We're still dealing with that and we perpetuate it every year when we keep kids in school segregated from their peers. And we've got to come to grips with that at some point, and we'll come back to that a little bit later.

So the culture is really what we're doing and the culture is our values. And you don't change them by passing a law. If it were that easy, life would be a lot of fun. We're talking hard, hard work.

Okay, 1918, getting a little closer, we got the first piece of specific positive, maybe, disability legislation, realizing there were veterans coming back with disabilities and that we needed to do something as a country. So the Smith-Sear Veterans Rehabilitation Act, which eventually became what we know today is Voc Rehab, was enacted in 1918; limited kinds of services but attempts to rehabilitate our veterans with disabilities so they could be gainfully employed in the community.

Then we made a big jump in 1920. We modified the law. It was then the Fess-Smith Voc Rehab Act and we added civilians, but only with physical disabilities. Because that's who we were talking about. But the federal government then started a major initiative of saying it'll put up 50% of the money, the states will have to put up the other 50%. You will see that that's evolved over time. So that was a big step forward, at least in beginning, that some people with disabilities had capacity to be gainfully employed in our society.

Then things shifted again in 1927. We had a Supreme Court case, Buck v. Bell out of Virginia where they were doing mandatory sterilization of men and women who were defective; idiots, imbeciles, morons or whatever. And the part that is disconcerting here is the majority opinion, and this was an 8 to 1 opinion, was written by the Honorable Oliver Wendell Holmes, a very revered Supreme Court justice. But I've given you a bit of a quote of what he had to say.

Carrie Buck was the young lady who was the plaintiff in this case, "She is a feeble-minded white woman," so we weren't dealing with color here, that would have made it even more interesting, "who was committed to the State Colony." That's what they call the institutions in Virginia.

"She's the daughter of a feeble-minded mother in the same institution, and the mother of an illegitimate feeble-minded child. It is better for all the world," in the conclusion he said, "if instead of waiting to execute degenerate offspring for a crime, to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind."

We were in the period of eugenics at that time in our history, and consequently, that value was embraced by the majority of the court, including the Honorable Chief Justice Oliver Wendell Holmes. Recent research has helped us understand where he came from. His brother was the Professor of Eugenics at Harvard University. So that just came out within the last 10 years or so. 'Cause some of us couldn't reconcile this person who had a very strong sense of social justice. But he really was into the eugenics thing.

And unfortunately, this case played out in Nazi Germany as well. And as a result what happened is, people from Germany, when Mr. Hitler was still working on the superior perfect race, came here to Virginia and other institutions where we were doing experiments, to see what was going on, and got reinforcement from this court decision that people with disabilities are not going to help his master race. And if you're not aware, and Dr. Wieck has now documented this in another series from the Governor's Council in Minnesota, that the first people to be slaughtered in Nazi, Germany, were people with disabilities.

The second group referred to as gypsies, were people who today we would call LBGTQ. And then it was the Jews. And most of the Holocaust Museums have now added these components to make the history clear. But this is an unfortunate piece of our history, that to some extent we contributed to Mr. Hitler and his notion of the perfect race, if you will. So consequently, we can look back on that with a little bit of pain.

1931, well a little bit of progress. There were people who were blind showing up and we created in Congress the Talking Books Library. And again, Public Law, the 89th Congress 522. So that was a step forward.

And then 1935, a gentleman named Franklin Delano Roosevelt became president. Most people know he used a wheelchair, he had endured polio. But he did his best to cover it up because he knew it still wasn't socially acceptable to be a wheelchair user. Or perhaps in those days, as in the law it says, crippled. But he did pass the original Social Security Act, we've had lots of amendments to it. And also started what was then called Crippled Children's Services. Today we know that as children with special healthcare needs, but it was crippled. And think about that word today. That's a very negative word.

But it was Crippled Children's Services, and there was a substantive clause in there which people don't realize that said that the physical therapy, occupational therapy, speech language therapy, could only be given to those crippled children who could benefit.

Guess who was excluded? Those children with intellectual disabilities or perhaps those who didn't have verbal communication who were then presumed to have intellectual disabilities. So it was exclusive. But again, if we look at incrementalism, one can say it was at least a small step forward by getting PT/OT speech language out into the community for some kids.

Then the blind community was pretty active. And in 1936, we got what's known as the Randolph-Sheppard Act, still in force. And you've probably seen it in some places, not as many as used to be, but vending stands in federal buildings that were operated by people who were certified as legally blind. And that gave them an opportunity to have a small business enterprise.

And then 1938, ooh, now we're merely getting close, the Fair Labor Standards Act, FLSA, which set the standards for minimum wage and all kinds of things. But remember, at this point, people with disabilities were still seen as crippled, defective, idiot, imbecile, moron, deaf and dumb. Go down the list of all the old language. So, we had 14C as a section added to allow sub-minimum wage.

That was 1938, that's 84 years ago. In fairness, the attempt was positive.

How can we allow these people to do something meaningful and make a little bit of money as opposed to doing nothing? But again, 1938, we didn't have assistive technology, we didn't have special education, we didn't have behavioral interventions. We didn't have a lot of the tools, we didn't have universal design for learning.

So I'm trying to put it in the context that it was a step forward with the best of intentions, but we're still debating it in 2022! And we'll come back to that later on as well. But we're getting close to eliminating it, finally.

Same year, 1938, the Wagner-O'Day Act, federal purchasing from workshops for persons who are blind. And that has continued and now it's Ability One and there's all of that. But they've moved very fast forward recently to get rid of sub-minimum wage because that used to be federal contracts that could go to the sheltered workshops to take care of these poor, helpless, unfortunate people and let them make 15 cents or 25 cents an hour.

So we made a little bit of progress. And then World War II. And 1943 comes along and we amended the Voc Rehab Act again. And on a limited basis, we added people mentally handicapped; that was the improved word over idiot, imbecile, and moron; and people with serious mental illness. So that was again, incremental first step, okay? Not great language but better.

1946 National Mental Health Foundation began. This was a group that was concerned about the abuses in psychiatric facilities. So another major effort on the volunteer side, as you'll hear, many of which have come since.

1947, first meeting of the President's Committee on National Employ the Physically Handicapped Week. And I wanna digress for a minute because as you know, we don't use that word or we shouldn't be using that word anymore, but its derivation is the problem. Handicapped comes originally from the United Kingdom, cap in hand, a beggar. That's why we have replaced it. Some places still have handicapped parking places and whatever. The word today is disability or disabled. But handicapped, we now know, is a negative term and that's why eventually we took it out. But that's where we were then, right? So we had Employ the Physically Handicapped Week. Notice, it was only for people with physical disabilities in 1947. That has now changed. And in fact, right now in the month of October, when we're doing this, it is National Disability Employment Awareness month. All disabilities. That's a good thing, all right?

1948, making a little progress in the federal government, anti-discrimination based on physical handicap and U.S. civil service employment is prohibited. That was a big step forward. That's a chunk of time ago. That's like 70-plus years.

And then right here in Minnesota, the Parent Movement began with The Arc. Now we know it as The ARC, then it was the Parents and Friends of the Mentally Retarded. And UCP began in New York, United Cerebral Palsy. And those organizations got started by parents who were tired of the institutional response. They wanted something better. They wanted their kids to at least be at home and be somewhat in the community. And consequently, they began their national effort to move us forward.

Then unfortunately, again, we still don't have a lot of the tools that we now have today, in 1950, Congress passed a whole bunch of welfare laws. The one that affected us is Aid, listen to the words please, to the Permanently and Totally Disabled, APTD. This, at that point, was partial federal and partial state match, and it was welfare for these poor, my language now, helpless, unfortunate people who were permanently and totally disabled. And you can look at all the words that went with that and you can read the transcripts and whatever, but these were these poor unfortunates that we have to give a little money to so they won't be sitting out on the street corner hopefully with their cap in hand begging. And that became, later on you'll see, SSI. But the definition has never changed.

So, this was again, before technology, before special education, before vocational rehabilitation, before universal design for learning, before supported employment, before customized employment, before behavioral intervention. So we didn't have any of the tools in the toolbox to assist or support people with significant disabilities to make a valued contribution. That has changed but that was the perception and that was the value. Now we're talking only 72 years ago. Again, from a historian's perspective, that's a blip, that's somebody's lifetime. It's not centuries.

1954, Voc Rehab again gets expanded, finally. And funds for a hundred university-based programs are put into the law. And the federal match which had been 50, was now up to 60%. So making a little progress saying the federal government needs to invest more in rehabilitation for people who have disabilities.

1954, big Supreme Court case in the civil rights world, Brown versus Board of Education. And guess what? Here we are in 2022, and I think all of us would have to admit it still has not been fully implemented in many communities in this country, even though the words were exquisite and they applied to the disability community as well, separate is not equal. And we have some people who say separate is better. Don't know about that but separate is not equal. So that's 1954.

1956, the Social Security Act started by President Roosevelt was amended and we added what is known as Social Security Disability Insurance or SSDI. And at that point, it was for people ages 50 to 64. In 1960, we dropped the 50 starting point and the age of onset continues to drop down as it is. And then we added disabled adult children, which involves lots of families today who have a son or daughter with disability that any onset prior to age 22, they will be able to participate in their parents' social security benefits. Again, these are all complicated things but they were started in the '50s and '60s.

1961, making a little progress. The American National Standard Institute issued the first architectural codes for physical accessibility. We know this as ANSI. So that's 60 years ago.

In 1962, look at this. The President's Committee on Employment of the Physically Handicapped became the President's Committee on Employment of the Handicapped, okay? So we became more inclusive, still using the word handicap, but that's still 60 years ago.

1963, a big shift in the intellectual disability community. President Kennedy had been elected and, as you all know, had a family member with significant disability. But the power behind the President on these initiatives, and I wanna be clear about that, was Eunice Kennedy Shriver. She's more known for Special Olympics. She was in her brother's face even before he was elected. And once he was elected, in her Massachusetts accent, as best I can replicate it, "Jack, you gotta do something for the retarded." And Eunice, God love her, would never stop using the word mentally retarded till she passed. And we ignored it because she did so many other wonderful things. But she got what was then the President's Committee on Mental Retardation, now People with Intellectual Disabilities, started. We got the Mental Retardation Community Service Act, the Community Mental Health Act. I don't know that that would have happened without Eunice in the background really advocating with the President. And then we started the Mental Retardation Research Centers and that began what we now know as the Association for University Centers on Disabilities.

And then in 1964, landmark Civil Rights Act. But Civil Rights Act having to do with race, not having to do with disability or any other stricken category. So we made some progress but we have more to go. So moving along now, we're getting closer to our current year.

1965, the Vocational Rehabilitation Act was amended again. Gets a lot of activity, work, expanded eligibility, some more people with disabilities. It added something called extended evaluation. It might take more time to determine somebody's vocational skills or their capacity. That's a good thing, moving in the right direction. That it's not gonna be 30 days and we'll get you a job and everything's wonderful.

And that amendment also set up the National Commission on Architectural Barriers, which is around today as well. And the federal government now increased the federal match to 75%. So again, making it sweeter for the states to say, we'll put up 75, you just have to put up 25. If you recall, when it started, it was 50/50. So same amount of money gets you a lot more federal money as this thing goes forward. So that's a good thing. And unfortunately, even in 2021, where you'll see it became 80%, pretty soon there are still states that can't come up with the 20% state match. And at the end of every year, the federal government does a raffle to states who say, we've got some extra money unspent, who's got 20 cents on the dollar to come get it? That tells us something about priorities in state legislatures, I'm sorry to say. Or the lack of advocacy for vocational rehabilitation in state legislatures.

All right, then the big one, 1965, the Great Society. The President at that time was Lyndon Baines Johnson, who did an enormous amount of congressional work because he had come out of the Congress and he just put all kinds of stuff through. He tried with all of his power, with all of his influence, to get what we're still debating today in 2022, universal health insurance. He could not pull it off. So he ended up with what is known now as Title XVIII, and Title XIX of the Social Security Act, better known as Medicare, Title XVIII, and Medicaid, Title XIX. And they've evolved.

Medicare was primarily tied to Social Security as part of some healthcare for your retirement or if you became disabled. Medicaid was strictly set up for people of low income. It was a poverty program, Aid to Families with Dependent Children, Old Age Assistance, Aid to the Needy Blind, Aid to the Permanently and Totally Disabled.

Those were the four categories of low-income people who were already getting welfare checks, who then could get a Medicaid card. And initially, it was left to the states to decide if they wanted to play or not. There were varying federal matching ratios based on per capita income, reset every year. And then there were certain things you had to do and some things you could opt to do or not do. That still continues today. It's kind of an à la carte.

And as I tell people, you've read one state Medicaid plan, you've read one state Medicaid plan. You go to the next state and the menu is different. And that's the way it is 'cause it is a federal-state collaborative effort. So consequently, Medicaid has grown a great deal, as you'll see later on, but it was started as health insurance for people of low income, as part of the Great Society.

In 1967, a major amendment was added to Medicaid called EPSDT, Early Periodic Screening and Diagnosis and Treatment. The whole purpose of this was early intervention, prevention, to get ahead of whatever might be going on in a child, in order to reduce costs later and enhance health status and quality of life. Unfortunately, it took a little more court action, as we'll see later on, to get it straightened out. But it was added as a primary prevention tool, at least in the low-income community.

Okay, same year, 1967, Congress was busy. Voc Rehab was amended again, and money was put forward to build the National Center for Deaf/Blind Youth and Adults, which continues till today. And the federal match in 1968 was raised to 80%, and that's what it still is today. So in your state vocational rehabilitation program, if you're not aware, your state only has to put up 20 cents on the dollar to get 80 cents. I'd like to go buy something for 20 cents and get 80 cents back. I don't know where I can do that. And as I said previously, some states still are not coming up with enough of the 20%. And therefore, they still have waiting lists or they have priorities and all of these things because they don't have enough to meet the need.

1968 Architectural Barriers Act was passed regarding federal buildings and any rental property used by the federal government, that there had to be minimal accessibility standards.

1969, a big year in the intellectual disability world. Parents in the Commonwealth of Pennsylvania, with the Pennsylvania, at that time, Association for Retarded Children, which then became Association for Retarded Citizens, and now is just The ARC in all places, were tired and frustrated of begging for school services for their children and not being able to get them because in Code, and this is unbelievable but it was in the law in Pennsylvania and many other states similar, in order to enter first grade, you had to walk, you had to talk, and you had to be toilet trained. I would like anybody to show me a research study that says any three of those things have anything to do with the ability to learn or process information. Okay? But you had to walk, talk, and be toilet trained to do that. So think of the thousands and thousands of children who couldn't pass the entry criteria to go to school!

So a number of the parents got together for a couple of years, one of whom was an attorney, and they decided to get the guts up to sue the Commonwealth of Pennsylvania in Pennsylvania State Court for violation of their kids' rights. But they needed a civil rights kind of attorney. And the dad who led this, Denny, was not. He was a commercial lawyer. So they brought in this gentleman now deceased, Tom Gilhool, who was at the Public Interest Law Center of Philadelphia. And I had the pleasure to know Tom and work with him. And sat him down and laid out the stuff and said, "Will you take the case?" And Tom said, "Let me study it, let me think about it. I'll come back to you in a couple of weeks."

So they go back to the home, they sit down and he says, "I like your case but I don't want to do it in state court, I want to do it in federal court." Well, it had taken the parents almost a year to get the guts to take on the state, commonwealth, and state court, and then here's this young attorney saying, "No, we're going to federal court and I've passed the bar and I've got status if we have to go to the Supreme Court" and blah, blah, blah, blah, blah, blah, blah. To which they said, "We need a few weeks to think about it." Well, they thought about it and they said, "Let's go." Thank you, Tom Gilhool.

Ladies and gentlemen, one of the things we have lost in our history is that special education came from civil rights decisions, not inadequate funding or what we often hear from school as unfunded mandates. That was a mistake, we'll get to that in 1975. Gilhool, in my opinion, was brilliant. He used critical protections called equal protection and due process and then deprivation of liberty. We throw those words around all the time, right? They're part of our Bill of Rights, part of our Constitution. We hold them near and dear. Except for them.

And the analogy that Tom used was the criminal justice system. He said, number one, these children have done nothing wrong. They are entitled to equal protection under the law, which means public school. They are entitled to due process to determine what that education may need to look like. And again, remember, this is '69 to '71, '72. We didn't have any of the tools that I've mentioned before available. So it was still, how are we gonna make this all work?

And then the construct that he brought beautifully to the table from the criminal justice system was deprivation of liberty. He said when we send somebody to prison through due process for committing a crime, in most cases, it's a time-limited sentence and they can return to liberty. If in fact we are going to have any of these children not in the school in their neighborhood with their age peers, but in a separate class or a separate school, and he conceded that could happen, we must return them to liberty as soon as possible because they didn't commit a crime.

Unfortunately, that got somewhat lost, in my opinion, with the concept of least restrictive environment, but the intent was purely a civil rights case that these children did nothing wrong and their rights must be protected. That was the beginning of moving into a civil rights framework for children with disabilities. And we'll come back to that in a little bit where it ended up.

In 1970, that Mental Retardation Act from the Kennedy era of 1963 was bubbling around. And this was after Kennedy was no longer there. And what happened is his brother, the late Senator Ted Kennedy, sort of became the heir apparent in the Senate and the person that people went to for disability policy. So he was getting barraged. Well, you've got a mental retardation one, we want a cerebral palsy one, we want an autism one, we want a learning disability one, we want a spina bifida one, whatever, whatever.

Not in the history books, but what he did is he had a meeting in 1969, '70, with a group of the leaders, the late Elizabeth Boggs, Elsie Helsel from UCP and others, in the bar at the Hotel Washington, in Washington D.C., with all of these ferocious parent advocates and said it's not gonna happen. You need to come together and help me put together a law that will cover all of your children or all of these populations. So again, I want everybody to know developmental disabilities was a term coined in a bar. It's not a medical term, it's not a psychological term, it was a compromised term to try to create an umbrella under which all of these children would fall in terms of getting, in this case, planning later on services and how that would all work.

And that resulted in the Developmental Disability Services and Facilities Construction Act and the beginning of what we now know as the State Councils on Developmental Disabilities, and the shift from the Research Centers for Mental Retardation, to the University Centers on Developmental Disabilities. So it's a very interesting history of how people were brought together to come up with a solution that they could all live with and yet try to move the ball forward toward the goal line. And we'll see how that term evolved over time.

Okay, 1970, '71, in Alabama, there was an institution in Partlow and the case was called Wyatt v. Stickney. And it was about the right to treatment because horrible things were happening to people in all the states and institutions. But a group of families got really upset about the abuse and neglect and filth in this institution. And this case was won in a very different way from subsequent cases where the court agreed there was a right to treatment and ordered the state to improve staffing and training and standards rather than, as some cases later on, said no close it, it's not fit. So this was, again, it was a move forward though. It was an attempt to say this is unacceptable, we've got to make these places better. So that happened in '70, '71.

Also in 1970, we got some headway in the public transit world with the Urban Mass Transit Act, better known as UMTA. And all new mass transit vehicles had to have a wheelchair lift. Okay, that's progress for some people.

Medicaid, which started in 1965, also, I forgot to say that earlier, did include skilled nursing facilities. As a result, because of the federal match, state developmental disabilities, in those days mental retardation agencies always were looking for money, so they began to convert wings of state institutions to skilled nursing facilities in order to get federal dollars. I get it, chase the money. Okay, now we wanna chase the money for good things. Not such things.

So what happened is, thanks to the state directors then of mental retardation, now Developmental Disabilities Association, the Intermediate Care Facilities for people with mental retardation was created. To differentiate it from nursing homes, it had what was called active treatment. I can assure you, we never came up with a good definition of what active treatment really looked like in spite of many meetings over many years in Baltimore and in D.C. But the attempt was to say, this wasn't domiciliary skilled nursing, but something more habilitative in its way. And that's when the federal money began to flow to state institutions, again at that 50 to 78% federal matching ratio. So that was another important piece.

Counter to that, in 1971, the Independent Living Movement began in Berkeley, California, originally as the Physically Disabled Students Program with the late Ed Roberts, Hale Zukas, and a couple of their friends, who, and Ed, if you don't know his whole story, had to sue to get into Berkeley because he was a person who used the chair, a ventilator, had experienced polio, had lots of disability. But had a pushy mom also and she didn't even go to Partners but she knew better. And ironically, when he got to the university after suing, they assigned his dormitory as the infirmary. Isn't that nice? That's where I want to go to college, I want to be in an infirmary. Somehow my social life won't be quite the same. So he and a couple of his buddies busted out.

And the other important thing about Ed, which I hope you all know, is he was at that point declared non-feasible for vocational rehabilitation by the California Vocational Rehabilitation Agency 'cause they could not envision him becoming a productive, contributing member of society because of the severity of his physical disabilities, using a ventilator, power chair, all that stuff. Well, as it turned out, he graduated and he graduated well, and then there was a Governor in place named Jerry Brown, the first time around. And Jerry Brown had met Ed. And he liked Ed. And he knew he was bright. And so the agency that rejected him as non-feasible for employment then ended up with him being the State Agency Director of the largest Vocational Rehabilitation Agency in the United States of America. Not too shabby. And he married and he had a child and all that kind of stuff to have a real life. But that was the beginning when he started the Physically Disabled Students program, what became the Independent Living Center in Berkeley.

Next lawsuit, Washington D.C. 1971, Mills v. Board of Education. Building on the work of the Pennsylvania case from 1969 and using some of the same arguments, another federal court case was won. And so now we had two, and there were a bunch more before we get to 1975. We'll get there in a few minutes.

But we were beginning to build the Civil Rights Education agenda for children with all types of disabilities. And then in the mental health world, in 1972, a major organization was created, the Judge David L. Bazelon Center for Mental Health Law. They just celebrated their 50th anniversary. And many of our national leaders have come out of that organization, and they are now in the federal government and the Department of Justice, ACL, all kinds of things. And they've been involved in some major litigation. So this was a major effort to begin to raise the profile for people with mental health issues, serious mental illness, alcoholism, substance abuse, et cetera, who really weren't much on anybody's radar screen at that point.

1972 also, Aid to the Permanently and Totally Disabled, Aid to the Needy Blind, and Old Age Assistance from 1950, which had been state federal welfare programs, became Supplemental Security Income. All federal money, no state match involved. But ladies and gentlemen, as I said previously, the definition of eligibility was still the same as aid to the permanently and totally disabled in 1972, even though we had made some progress. And again, painful as it is for advocates, parents, self-advocates to hear, SSI is not Social Security. It's administered by the Social Security Administration, it comes from the general fund, and it is a welfare check. And in most states, it is automatically linked to a Medicaid card. In some states, it's linked to food stamps or LINK or SNAP, or whatever it's called in your state, et cetera. But we need to be clear, even though it's administered by the Social Security Administration 'cause they're good at getting checks out and processing a little slow these days, that it's welfare. It comes from the general fund, not from the Federal Insurance Compensation Act, better known as FICA, which we all take out of our paychecks that go into the Social Security Trust Fund, all right? And then children were added a little bit later, all right?

1972, big year in the field of institutions. There was an exposé of a place called Willowbrook in New York on Staten Island, a big, big institution. Probably put Geraldo Rivera, the news reporter, in the limelight for the rest of his career. He did a photographic exposé. He had some inside helpers, Dr. Bill Bronston, Bernard Carabello, and others. And it blew people apart. And when Senator Kennedy went to visit, his quote was, "I can't believe the snake pit I have just seen." That's a direct quote from a U.S. Senator. That's how disgusting and appalling the conditions were. And it's really a tragedy that that's how we were treating fellow human beings, lying on the floor in urine, in feces, being hosed down, no privacy, no sanitation, no attempt at any kind of habilitation. The worst kind of custodial care. People in penitentiaries were getting better services than people in Willowbrook and most state institutions. So it took a while and there were lawsuits and all kinds of stuff, but that was the beginning of the big-

And that was a much bigger exposé than the one in Alabama at Wyatt v. Stickney because it was in a different world. And it was New York and it was Staten Island and there were more wealthy people involved, for whatever reason. Politics is politics. But it got the press. It got the press.

And Bernard Carabello, a gentleman who experiences cerebral palsy, when he finally left there, he got to lead the self-advocacy movement for the New York State Agency and help lots of other people with disabilities emerge into self-advocacy life, which was kind of cool.

1973, Voc Rehab amended again. Oh my goodness. We added people with quote, unquote, severe disabilities. Oh wow, we're really opening it up. Anybody can work now maybe? Hmm! And we've now called IWRP, the Individual Work Rehabilitation Plans. So it was a change. And we added several sections, 501, 503, the most important for us, 504 Disability Civil Rights Law, the first one coming 10 years after the Civil Rights Act in Congress for people of color. And basically what this one said is that any entity receiving federal funds cannot discriminate against a person with a disability, and must make what we now call reasonable accommodation. That was a pretty significant step almost 50 years ago today, okay?

Then the next year, I guess the institutions decided they needed to be attacked. So the plaintiffs got on it. And in Pennsylvania we had Youngberg v. Romeo, which was the Pennhurst case; Welsch v. Likins in Minnesota. The Pennsylvania case, as different from Alabama, the case was pleaded so well, again, by Mr. Gilhool, and some of his colleagues, Frank Laski, that the judge said it's not fit for human habitation and close it. Unfortunately, you know hindsight's always 2020, Pennhurst eventually got closed, but a lot of people got moved to other state institutions. And it wasn't a class action that would say, no close them all 'cause they're all equally deplorable. That wasn't where we were at the time. It was just like Willowbrook, a real snake pit. So we move forward.

But piggybacking on the Independent Living Movement, in more the world of intellectual developmental disabilities, in 1974, People First, now still around, but also Self Advocates Becoming Empowered, SABE, National Self-advocacy Organizations, in the developmental disabilities world, had their first convention in Salem, Oregon. Wow! That's coming up on 50 years ago. So self-advocacy in the developmental disabilities world, sort of piggybacked on the Independent Living Movement from my perspective.

Then that Developmental Disabilities Act was amended in 1975, and thanks to the Willowbrook exposé, we added the Protection and Advocacy System for people with developmental disabilities, giving unbelievable rights to a federally funded advocacy organization to go into institutional facilities and bring complaints or file lawsuits. And there have been attempts by a group called today, Voice of Reason, used to be Voice of the Retarded, in recent past Congresses, and last several, to try to amend that. So remember what I said early on, we have to have our rearview mirror, we have to know our history. That was an important piece. We cannot lose the role and responsibility of Protection and Advocacy Systems now known as Disability Rights Centers in every state in this country. And if we do, I don't even want to think about the horrible things we might see. So they need to be there and they are.

And we added then Projects of National Significance, another pot of money for the federal government to do some initiatives.

And then yes, finally, as a result of the Pennsylvania case, the Mills case, and 20 other right to education cases, Congress in 1975 passed the wonderful then Public Law 94-142, 94th session of Congress, 140 second bill signed into law. But again, look at the language, old, Education of All Handicapped Children's Acts. And the beginning of the Parent Training and Information Centers.

This is the law that says children with disabilities have a right, and it's in the law, have a right, so it's Civil Rights Law, to a free, appropriate public education of special education and related services. And those are defined in the least restrictive environment, based on an individualized education program. We're coming up on close to 50 years of that law and we will come back to this later. We still have a lot of work to do.

And unfortunately in the law, I say that because we learned in the Americans with Disabilities Act and didn't do it, Congress put money in there and said that the federal government will pick up 40% of the excess cost for educating a child in special education. So if the typical cost of a kid, let's just say is $20,000, and a kid in special ed, the average, I'm just gonna pull a number, is $30,000, the federal government will pick up 40% of that $10,000 difference between 20 and 30, and then the state and the local have to pick up the rest. Unfortunately, that has never been more than about 12 to 13%. Consequently, many of you will find school districts saying it's an unfunded mandate. No, it's not an unfunded mandate, it's a Civil Rights Law. But there are, and we'll talk about later, attempts to try to straighten this out.

But when we go to IEP meetings, I always encourage families and advocates, don't get caught up in the budget. Free appropriate public education, least restrictive environment, special ed and related services, Individualized Education Program, it doesn't say subject to funds available. It's not in the law. We can have that conversation outside. I've done that and say I'll help you at the school board level. In this meeting, we're talking about this kid; whether it's my daughter, my stepdaughter or somebody else, this is what the law says they get. Let's figure it out and get on with it. So we need to understand where that comes from.

Okay, this Section 504 that happened in 1973, got caught up in politics. Because remember in our early discussion, we have the legislative branch and then we have the executive branch which writes the rules or the regulations. And the Secretary at that time of what was Health Education and Welfare, today, Health and Human Services, still wasn't signing the regulations four years afterwards to implement this non-discrimination with federal funding against people with disabilities. There were protests in many places in this country. In my youth, at that time I was in San Francisco, I was The Arc San Francisco exec. We had a wonderful relationship with the folks at Berkeley who were heavily involved in this, Ed Roberts and Judy Heumann. And the other thing that was important about Ed and his legacy, is Ed could care less what your disability was. We were all brothers and sisters and he didn't play this hierarchy game about people with intellectual disabilities or whatever.

So 12 of the people sitting in in San Francisco were from The Arc of San Francisco, and I was there as well, along with a lot of the folks from Berkeley, and proud to do it, to get the message across, this is enough. Sign the darn things. And finally, Secretary Califano signed the regulations. That was the first big piece, I guess, of civil disobedience in our advocacy strategies beyond just going and testifying and writing letters and showing up at hearings and those things. And that's a chunk of time ago.

And then right after that, 'cause that was so successful, in Denver, Colorado, ADAPT, a national organization today that started in Denver, decided they were fed up with not being able to ride the public buses. These were a lot of people who used wheelchairs. Had come out of nursing homes, were living in the community. And Wayne, the director, said enough of this.

So they literally were in downtown Denver and they just lined up their wheelchairs in front of the buses on Broadway and stopped the traffic. And there's a monument there now and a plaque and all of that. And guess what? Denver decided they better start putting lifts on buses. So civil disobedience again within one year after that. And here we.

And in 1978, one more time, we amended the Vocational Rehabilitation Act. This was substantive, not that the others weren't. We added what is known as Title VII for the Centers for Independent Living. This grew out of what happened in Berkeley, thanks to Ed Roberts and Judy Heumann and others. And all of a sudden, there was a movement afoot, that we needed some of these in every state, multiples perhaps. And they had four core services in the original law in 1978. Information and referral.

Well, that's a good thing to get 'cause the bureaucracy is confusing and uses lots of jargon and acronyms for any of us. Skills training, oh, what a novel idea, to be better at something. Peer support, critical. And again, I'll mention this probably several times later, we have slowly learned that peer support may apply in every area of our work. Whether it's teacher to teacher, self-advocate to self-advocate, parent to parent, person with a physical disability to another person with a physical disability, employer to employer. Across the board, the most impactful teaching can occur from a peer who has some experience that you have not had.

So that was built in, and advocacy, and we added another component to the Protection and Advocacy System for individuals receiving rehabilitation. So we've broadened out the Protection and Advocacy System population several times now, and it'll happen one more time.

So that was a major piece. And every state now has a State Independent Living Council, it has multiple Centers for Independent Living or Independent Living Centers, and the boards must be dominated by people with disabilities, it's in the law. And they're in some states more active than others; in some communities, more active than others. But they do exist and are reasonably well-funded.

In 1979, another parent group got started, the National Alliance for the Mentally Ill, better known as NAMI, was founded in Madison, Wisconsin, by parents of people with serious mental illness. And they continue today to do their advocacy work.