40th Anniversary of the Founding of California's Regional Centers.
Interviewer: Do you remember that day she was born?
Kathryn Nack: Oh, indelibly in my mind, yes. It was not that day; it was early the next morning that we were told. And I thought it was extremely cruel because the pediatrician called. He was a fill-in for our own pediatrician; they trade off. Called my husband at the office, told him about Susan, and said, "I thought maybe you'd like to be here when, you'd like to be here when I tell your wife."
Well I know it was very cruel of him to tell my husband on the phone. Is that supposed to be different? Is the father supposed to be different from the mother in emotions and feelings? But, I have resented that all these years.
Margarete Connolly: I was in St. Mary's Hospital, and when they brought Ann in to me and they told me I couldn't nurse her but they didn't tell me really why and out. I had some suspicions that she looked strange. Then the pediatrician came in. I think he came in three times one day, and he sat and talked to me and then he'd get up and go out. And then he'd sit and talk to me and go out.
But he never said anything, you know? Finally, the obstetrician called me and said, "Has your pediatrician talked to you about Ann?" And I said, "No," so he told me.
Vivian Walter: About two weeks after he was born—everybody kept telling me how wonderful he was, and I thought so too. Two weeks after he was born it was Mother's Day and we had a party at our house, had lots of friends over. The doctor who had delivered Ned phoned me and said, "Happy Mother's Day." And I thanked him and I was so thrilled. That was on a Sunday. The next morning, Monday, the same doctor called my husband at his office and said, "Your son is mentally retarded."
Slide: In 1999 California's sons and daughters with developmental disabilities, like any other citizens of the State, have access to education, health care, housing, jobs and a wide range of resources in their own communities.
Slide: 35 years ago they did not.
Slide: Today these services are coordinated through 21 locally controlled non-profit organizations known as California's Regional Centers.
Slide: 35 years ago there were none.
Slide: In the early 1960's, a group of parents, working with legislators and professionals, challenged the State to change.
Slide: Told in their own words, this is their story.
Slide: We're Here to Speak for Justice – Founding California's Regional Centers
Slide: The Closet
Lotte Moise: They said, "Well, Malba, she may never make Phi Beta Kappa, but you... that will bother you much more than it will bother her." And that was as close as he came to giving me some kind of a diagnosis.
Vivian Walter: Of all these doctors, there were... there were six doctors that we had seeing Ned and gave their opinions to me over the phone. These are people who had never met me, nor my husband. Their only knowledge of us was having seen this little baby.
And one doctor said to me, fiercely he said, "Take this baby to your breast, take it home, and take care of it. This is your child, and God meant you to have this child, and this is God's way," and so forth. Another one that same day phoned me and said, "Don't bring your child home. If you do, you will be divorced from your husband. Put your child in a state institution immediately. Don't even come back to see the child."
So I got all this kind of frankly crazy advice that was all, you know, one way or the other, according to the way that the person felt. But not good advice for Ned or for me or for anyone.
Interviewer: It was common for doctors to recommend placing the child because...
Margarete Connolly: Yes. And telling your friends the child died. These people lived with a terrible burden, having told their family and everybody that the child was dead and the child was growing to manhood, you know.
Kathryn Nack: How could a doctor say what was said to us? How could that doctor say put her away and then forget about her? It's not something that... It's not a human thing to say.
Vivian Walter: It was kept in the closet. It was a thing that people were ashamed of. They thought it was a... cast some kind of a blight on the name of the family. That it was... showed that there something wrong with the family, that they had what was called a crazy person.
Aseneth Young: Most people kept them in their homes and hid them. They'd say instead of having three children, that they had two children.
Kathryn Nack: It's not an easy thing. Today, it can't be easy. Then, when there was very little, if any, help anyplace else, unless you happened to know another family with a special needs child, it was... you felt completely isolated by yourself.
Vivian Walter: One couple, whom I shan't mention, had whom I knew very well in San Francisco, had kept their... Everyone knew they had a child, but they kept the fact that the child was retarded secret and they kept the child in the house.
And so everyone... all their friends knew that something was funny, but... but it was never discussed until we... I said, you know, that Ned was retarded. And so our friend said to me, the woman said to me and said to her husband, "If Vivian can say that her child is retarded, I can say mine is," and so she literally came out of the closet.
DeReath Collins: That's what I had grown up with apparently. With people being hidden, and I didn't know anything about them. Craig was the first disabled person I had ever been around, and, um, I just didn't think it was fair for him not to be involved. And I wanted other people to learn that they're going to be some disabled people around and you might as well get used to them.
Emmy Sokoloff: People who were kind of our inspiration was that small group of... of women, Vivian Walters, Margarete Connolly, you mentioned a couple of them, Pat Dunbar, and there was one... another one, and they... one of those, got... Elaine Mitchell, I think her name was, who lived in Sausalito to put an ad in the paper calling interested parents of handicapped children to a meeting at the College of Marin. And probably twenty or thirty people showed up.
DeReath Collins: The people that showed up and were concerned and involved, I felt a real kinship. And they were such... I don't know, there was something about them. They were just different.
Emmy Sokoloff: We did an awful lot of crying on each other's shoulders, and for the very first time we were able to sort of express our feelings to people who knew what we were talking about.
Margarete Connolly: I remember a couple of families coming who were among the more prominent families in San Francisco coming to some of our early meetings and saying to me afterwards, "You know, the thing that the Arc gave me more than anything else is being able to say, 'I have a retarded child.'"
Slide: A Sorry Mess
Jerome Waldie: For a parent of a retarded child, there was only... there were only two options. One, you kept the child home and dealt with the child as best you could. Or two, you would institutionalize the child. There was nothing in between. And as a... as a practical matter, that pretty well meant that you institutionalized your child.
Edgar Pye: To get into the Sonoma State Hospital, in the early days, it was really like getting into... admitted into a prison. You were committed, and that means a legal step in the law with an attorney and a judge slapping the gavel and saying, "Yes, you are eligible for Sonoma State Hospital and you are now hereby committed under the laws of the State of California in perpetuity unless you are cured." Now, I'm not...
Interviewer: There's no cure for mental retardation.
Edgar Pye: Right.
Lotte Moise: But my first impression came when I was taking a class at San Francisco State and met a woman who said, "Shall I show you some of the wards?"
And, um, instead of having lunch, we went and saw two places. One called Eched, little girls, mostly little girls with Down Syndrome, and my daughter Barbara doesn't have Down Syndrome, but she was at home being tucked into bed, surrounded by her dolls and stuffed animals and read to by her daddy.
And there were these little kids who when I came in just sort of clustered around me, wanted to hug me, wanted to touch me, said, "Momma, momma, momma, momma," and I guess that was in '59 actually when I was going to school at San Francisco State, but I made up my mind that, that was never going to happen to my daughter.
Arthur Bolton: I remember sitting in Sonoma, and there was like a little dining area, a place where patients could come and buy a candy bar and get a Coke or something like that. It was like a little luncheonette, and there were some tables.
And I was sitting with some of the staff, interviewing them at one of the tables, and one of the patients, who had come in for a candy bar or something, suddenly fell to the floor and was having a grand mal seizure. And other patients rushed to his side and were sort of trying to comfort him, and the staff that I was sitting with around this table continued to talk to me and just sort of didn't seem to be paying any attention to what was happening.
And I said, "You know, why don't we stop now so you can take care of...?" And I was told that, well, that just showed how ignorant I was that these patients often had seizures, it was just commonplace, and nothing bad would happen to them. It would only last, you know, a half a minute or so and then it would be over.
And somebody was already over there making sure that, you know, the person didn't bang their head too badly or whatever, and so it was okay. And I said, "It really isn't okay." If I were another patient and I saw you sitting here, you know, what message does that give me? That if I'm in trouble, you're not going to respond.
David Sokoloff: State institutional systems are private like prisons, and you can have a lot of abuses if... if nobody is watching. And, ah, I've seen abuses and stuff in other states as a... as a consultant and that... were appalling... Uh, falling, particularly when they were happening, you know, in the richest country the world has ever seen. Ah, you're doing really naughty things.
Dennis Amundson: Electroshock therapy, sometimes used for behavior control. Ah, time-out rooms, as they were affectionately called, meant if you misbehaved, they strapped you naked on a gurney and put you in a locked room until you quieted down.
You know, it wasn't too many years since the early '60s and late '50s they were still hosing down people as a form of behavior control. Putting them in hot and cold sheets to induce sleep as a form of behavior control.
We were still doing frontal lobe lobotomies in the early '60s in California. Um, frightening stuff. I mean, it was right out of "One Flew Over the Cuckoo's Nest."
So these were not pretty places. These are not humane places to live. People were stripped of lots of their dignities and then subject to some pretty cruel punishments.
Vivian Walter: Ned was born in Los Angeles, I came to San...back home to San Francisco the next year and then I joined the San Francisco Arc and began to work there.
And for some strange reason, I decided I wanted to be chairman of the hospital committee. We had no hospital committee, so we made a one-woman hospital committee, and that's how I began by going to the most local of state hospitals, local to San Francisco, and that was Sonoma State Hospital where I was detained by the superintendent, whose name was Nelson.
Dr. Nelson said to me in our first meeting, "Mrs. Walter, you'll be pleased to know that we keep our floors so clean that our patients can eat off the floors."
And I said, "That's what we don't want, Dr. Nelson. We want them sitting at tables and chairs, and eating with forks, spoons, knives, if possible." "Oh," he said. So we started off on that tack.
Kathryn Nack: There is a way to get from where you want... where you are to where you want to go if you just don't follow the rules and use your imagination.
David Sokoloff: We went at it... in... in a couple ways. One is to shame the society for treating people worse than animals. That... that... that's one way. And you do that at several levels. You embarrass the Governor and... you... you.. needle your own legislator and you embarrass your officials.
Vivian Walter: I talked to this young reporter from the Orange County Register, and he wanted to see Fairview. He had never seen a state hospital. So we went in when they weren't prepared for us and couldn't cajole us with cups of coffee and sitting around the superintendent's office.
The superintendent wasn't there, of course, at night. And we just knocked on the doors and over the protests of some people who were the caretakers, we went in. We found terrible conditions. We found filth in the living quarters of people. People were unbathed, poorly fed, not given any chance to progress or to develop skills of any kind.
It shocked this young man. He had never seen anything like this before, and I had seen it before, of course, and was dismayed and disgusted. But it was good for me to see it through the eyes of someone who hadn't seen it before and who was able to write about it. That was the important thing, that he could write about it and did, and that his paper let him write it.
Arthur Bolton: There were big newspaper stories about unconscionable conditions in California State Hospitals, and if you're a Governor responsible for those hospitals, you've got to do something.
Dr. Francis McOlash: Some of the psych technicians were arrested. They were taken into custody. One of my good friends who had been around here for quite a while was picked up at his house. He was fleeced in front of his family and all the neighborhood and... and taken off.
Interviewer: I had heard that the superintendent at Fairview, after you had gone there, resigned, right?
Vivian Walter: Yeah, yes, he resigned... He was... He disappeared, whether he resigned or was let go, whichever.
Interviewer: I'd also heard he died shortly thereafter.
Vivian Walter: Oh, I don't know about that. I don't feel responsible for him.
Vivian Walter: No, I don't.
Dr. Francis McOlash: It was...It was a bad day for Fairview. The effects of something like that live on for a long time afterwards.
Slide: Winds of Change
Vivian Walter: During John Kennedy's campaign, I had some relationship with his mother. I did public relations, and I arranged some parties and some things for Mrs. Kennedy Sr., and she wouldn't mention that she had a retarded daughter.
I talked to her about it privately, and I don't think she liked it, but she didn't mention it. And it wasn't until after he was elected that they came out with the fact that Rosemary, one of their daughters, was...had mental retardation.
DeReath Collins: I don't know whether mother would want me to say this or not, but, anyway, she wasn't real happy with the fact that we had a disabled person in our family. But when she found out, and this is a shame, I shouldn't say it. [inaudible] but I think it's the truth, "Oh, there are other people, you know, who have disabled people," and among them were the Kennedy's. And I think it became... It was almost all right for us to have Craig
Eunice Kennedy Shriver: It a huge difference, um, in terms of giving hope I think to families because now with the President of the United States leading the drive and saying we've got to do something about mental retardation. It's a disgrace to have over seven million people in this country living here without any kind of services—federal, state, or private.
President John F. Kennedy: Hearings begin in the Senate this week on our bill to combat mental illness and mental retardation. Almost every American family at some stage will experience or has experienced a case of mental affliction, and we have to offer something more than crowded custodial care in our state institutions.
Arthur Bolton: He put the issue of mental retardation out as a public issue, ah, and set up a President's Commission on Mental Retardation.
President John F. Kennedy: It has been tolerated too long. It has troubled our national conscience, but only as a problem unpleasant to mention, easy to postpone, and despairing of solution. The time has come for a great national effort.
Arthur Bolton: It was a special time in the nation. I mean, there were... I mean, the winds of change were everywhere.
Daniel Collins: It was an exciting time. You could get something done and that way... You have to have that kind of enthusiasm in politics because there's always competition for your energies and for your time and for your emotions (and for the dollar) and for the dollar.
Vivian Walter: If you live in San Francisco, what you do is you keep track, obviously, of what's going on in Sacramento and you get up very early in... on mornings, and you take the bus to Sacramento, and you go over to the Senator or the Assemblyman's office and you... without becoming obnoxious, you hope, you have at them and keep at them.
Daniel Collins: You go in and you beat on the table or whatever, you... you present your case to him. I knew Jess Unruh politically, and I would make sure that Jess knew I was interested in this.
Arthur Bolton: The Speaker in those days, Jess Unruh, caused this committee to be established, the Subcommittee on Mental Health with Waldie Lanterman and Petris.
Jerome Waldie: Jess was a person who felt deeply about political science issues and particularly felt deeply about the legislative and executive branches of government, and he came in when the legislature was clearly the subordinate branch of government.
Arthur Bolton: In those days, the legislature met only every other year and had very little independent capability to conduct research, to gather facts and develop their own, um, their own proposals for solving state problems.
Jerome Waldie: So he came in with a clear plan to bolster the capacity of the legislature
Arthur Bolton: Everybody could be affected by the problem of mental retardation. It didn't cut, you know, Democrat or Republican lines, so, um, this was a... this was a good problem for the legislature to look at. And he... he appointed a committee and they had one or two hearings, and then I came on board late in 1963.
Slide The Waldie Committee
Jerome Waldie: I wasn't terribly impressed with Art the first meeting.
Arthur Bolton: I remember my first meeting with Waldie. I came in and... and he said, "Oh, you're the guy that Unruh hired
Jerome Waldie: And I wasn't consulted as to whether he should be hired.
Arthur Bolton: And I said, "Well, I'll work for you, Mr. Waldie."
Jerome Waldie: And I wasn't part of the process in selecting him, which is somewhat the way Jess operated often
Arthur Bolton: And he said, "Well," he said, "Set up a hearing." And I said, "Well, on what?" And he said, "Well," he said, "on the hospitals. We have to... we have to improve those hospitals." And I said, "Well, what will we ask? Couldn't we find out a little bit...?" "Well, yeah, sure. Go ahead yeah."
Jerome Waldie: He thought that we should take a look at the entire mental health programs in California, particularly institutions.
Arthur Bolton: That's when we did the questionnaire to the hospitals. The hospitals were shocked when they got this questionnaire from the committee, I mean, asking all these questions and on all sorts of issues.
And I would... the director of the department at the time, he came into my office and he had a copy of this questionnaire, and he said, "You... You... "He said, "You can't be serious." He said, "We can't do this."
And I said, "Why not?"
He said, "Well, I mean, how, you know, we have very busy staff. I mean, this would take a lot of time."
And I said, "Well, the committee needs to know." And the committee, of course, was a subcommittee of Ways and Means, and Ways and Means controlled the budget, and so there was a lot of power.
And he said, "Well, you know, if you insist you really need this."
I said, "We really need it."
So he left, and then I began to get packages from each of the hospitals. You know, pounds of every rule and regulation and piece of paper that they had ever generated. I mean, I had stacks of stuff from the hospital, you know, six feet high piled up.
And... I figured, well, they probably decided that we'll show him. We'll choke him with this stuff, you know. And so I sat up, I read everything. I read every piece of paper.
Jerome Waldie: And then after all this information had come in, it was sifted through by Art and his staff, and then presented to us. And we would then go to the particular institution and hold a hearing at the institution on site.
Arthur Bolton: We had done our homework, we knew a lot about their operations. We asked very good questions. It was apparent that the State Department of Mental Health was not running those hospitals, had very little influence with those hospitals. They were separate fiefdoms, and they each had their own way of doing things.
So depending on which hospital you went to, you might or might not get education service. You might or might not get, um, dysentery. So I think that... that was a very instructive hearing, and we had testimony from parents, who talked about their desires for an alternative system.
Vivian Walter: "We're here to speak for justice and humanity, for the legal and moral rights of half a million citizens of the State of California, who through no fault nor choice of their own are mentally retarded. Among the most pathetic of this deprived group are almost 13,000 who are eking out a bare existence in our state hospitals." I'm getting mad. [Laughs]
Arthur Bolton: Vivian Walter testified and gave the parent perspective, and she was very articulate, very brilliant. She was beautiful, brilliant, and articulate.
Vivian Walter: In a recent issue of a national magazine, Mrs. Eunice Shriver wrote, "Even today, many retarded are shut away, child and adult, in squalid institutions to waste their lives staring blankly at the emptiness around them. I have seen sights that will haunt me all my life. If I had not seen them myself, I would never have believed that such conditions could exist in modern America, within sight of skyscrapers, suburbia, and freeways glittering with cars. I recall institutions in wealthy states where adults and children existed in crowded, bleak, foul-smelling barrack-like wards, their unwashed clothes and blankets in rags," so wrote Mrs. Shriver.
Eunice Kennedy Shriver: I wrote it because I felt that parents had been so poorly treated in this country. I thought it was outrageous that they had these children and nothing was happening
Interviewer: You said it made you angry, just starting reading it.
Vivian Walter: Yeah. Well, it makes... It brings it all back to me how, how angry I was then, and it makes me angry all over again, you know? I see these mental pictures of these things that Mrs. Eunice Shriver talks about.
Interviewer: What do you see?
Vivian Walter: I see people, as she said. I see people worse off than she saw them in rags. I see them naked in these foul-smelling wards with no furniture, nothing to sit on but the floor, the bare floor. Oh, it's... It was really... It was... It was hell. It was terrible.
Slide: New Paths
Arthur Bolton: The committee was formed, initially, to do something to fix the state hospital problem. It was only when they were into it for, you know, a half a year or more that it became apparent that the issue was not how are we going to fix the hospitals, but the central issue was how are going to create an alternative to the hospitals?
Richard Koch, MD: One day, I got a call from a guy by the name of Art Bolton. Art Bolton. And he says, "I'd like to attend one of your clinics someday."
Arthur Bolton: Yeah, Richard Koch was an instrumental figure in all of this. He was a very highly regarded pediatrician, who understood not only, ah, the issues and diagnosis, but also understood the service needs and worked very well with families.
Jack Linkletter: How do you do, Doctor?
Richard Koch, MD: Hi, Jack. How are you.
Jack Linkletter: Fine. What is that done here at the clinic?
Richard Koch, MD: Well, the clinic is used to study mentally retarded children and their families over a period of years. We're interested in finding out the effect of the child on the family to better educate other physicians and medical students in the future.
Jack Linkletter: So this is an experimental clinic, really, where you're researching and finding out new developments in the field?
Richard Koch, MD: That's correct.
Arthur Bolton: He had done some pioneering work. He had a traveling clinic that would go into rural areas and do diagnostic work.
Jack Linkletter: And, Doctor, could you give us a brief evaluation of anything that you ascertained from the test of Mary today?
Richard Koch, MD: Well, Mary's testing today wasn't successful, but she was tired and irritable, and I know from her previous performance that actually Mary fits into a moderately retarded group of children.
Jack Linkletter: Could you interpret what this means in, I don't know, how do you, in months of development?
Richard Koch, MD: Yes. Well, this means that she will be able to look after herself and care for herself and do some simple work, ah, sometime in the future. I think the most important thing was that is that we've reassured the parents that Mary will not disturb their whole household and that she will respond to them as the parents respond to her.
Richard Koch, MD: Art was really impressed with the fact that we would be willing to leave the children's hospital and go 75 miles and see patients. And the social worker and the public health nurse on our staff went out the day before, saw the families, got them oriented what was going to happen, and then the next day, we would evaluate the children and the psychologist would actually test the child, and we'd provide the service.
But I realized very quickly after we got into this work that it was all well and good for us to spend all this time and energy. If the family couldn't carry out what we intended for them, then it was wasted.
Arthur Bolton: What was needed was the creation of a system, multidisciplinary, that, you know, involved all of the psychological services, educational services and so on that would be required. You needed access to all of that, and you needed it delivered in a way that was affordable.
So that, that was what... you know, that was the alternative system that had to be created. All these services were available in the state hospital. See in the state hospital, you brought all of these disciplines together under one roof, and then, of course, the problem was in order to get those... those services, everybody had to go into the state hospital.
Now we were talking about providing those, and more and different kinds of services out in the community, and somehow or other organizing it into some sort of a reasonable system that people could navigate and get what they needed.
Richard Koch, MD: What Art Bolton and ah really felt was a critical importance to actually implement the plan that was developed, and that was the concept that was developed for the Regional Centers.
Arthur Bolton: It was a slam dunk, this bill was. I think it was a unanimous vote in both houses. Why would anybody oppose such a good thing?
Jerome Waldie: It legislated in... in the two regional centers, one in LA and one in San Francisco, this concept, that there be a place where a family could go when they had this problem to determine if there options other than institutionalization or staying at home available to them for their child.
Arthur Bolton: It had been a year of work. I had a one-year contract, and the year was now up, and we had done everything we had set out to do. And I went into Unruh's office and I... and I said, "Jess, good news. The bill passed, the mental retardation bill passed." And he said, "Oh, Bolton, " he said, "Don't get so excited." He said, "I guarantee you they'll screw it up faster than you can unscrew it." [Laughs]
Lotte Moise: The Regional Center, in my mind was, there was a place where we could get counseling, not just the children and the young people and later the adults—it was from cradle to grave—but the parents.
Aseneth Young: Did you ever feel you were alone in a place where there were other people but you didn't, either because of your color or your mode or whatever, you didn't fit in? And so life seemed very narrow and lonely and hard to cope. And as soon as you go the feeling that there were other people in the same problem, why, it was much easier.
Kathryn Nack: I... I have a friendship with Aseneth Young, had the friendship before, ah, we knew about each other's children, and, um, she told me about something that was going to happen, and she took me along with her to... to a couple of things that were happening in our geographic area, and that turned into being the Region Center System.
Voiceover: A group of professionals sitting in a clinic, focusing their attention on one child, one family, and its needs in the community. A fixed point where a retarded individual and his family are helped to find the services they need.
Margarete Connolly: The real radical thing about it was that we could sit down with people and analyze, along with their family, what it was they really needed to cope with life.
And we could then go out and buy whatever those things were. Respite care being one of the major, major things that would help a family to cope. Nobody had ever approached it that way. They... they, ah, tested individuals and if they had a certain IQ, they went to Sonoma and if they had another IQ they went to the public schools.
Vivian Walter: The state was spending the money in a state hospital in a state... in huge wards and all that kind of a thing and saying you belong in X and you belong in Y and you belong in Z. We were proposing, and we proposed and did, to take that same money and... what we used to say the money goes with the person. Do you remember?
The money is... we'd put in a little bundle and we'd tie it around the person's neck, that's what we said at the beginning, that's Gunnar Dybwad. And... so the money would go with the person instead of it going to the hospital, and the person would then buy rehab or buy education, buy whatever that person needed.
Kathryn Nack: With the beginning of the Regional Center System, there was hope for the first time. There was the... It was all right to keep your child. It was acceptable to start fighting for the things that, that child needed.
Jerome Waldie: By these regional pilot centers, we were seeking to prove that the infrastructure could develop, that the accessibility to other opportunities and alternatives was out there or could be developed out there.
Aseneth Young: We were sort of clearing away new paths to get the work done, and get what we needed, and they didn't exist, so we had to work on it so that it did exist.
Arthur Bolton: In that first year, they saw, some four or five hundred families who were on the waiting lists at state hospital, and only 25 or 30 got actually referred on to the state hospital, and they found suitable alternatives for all the rest. So, boom, that was it. That was the ballgame. The point was proven. You could do it. And, you could do it a reasonable cost, no more than state hospital placement, you could avoid the cost of building all those additional beds, and you could do it to the satisfaction of the families.
Slide: Shock Waves
David Sokoloff: It's hard to be an overt enemy in this thing. It really is. I mean, you can't say, "Handicapped children are no good."
Emmy Sokoloff: No, but you could say quietly, in a corner and with somebody and say,
David Sokoloff: And vote against it.
Emmy Sokoloff: "I don't know why the hell we're spending all this damn money on, you know, these...
David Sokoloff: And a lot of them did, of course.
Dennis Amundson: The Governor wanted to have a major tax cut. To do that, among other things, he proposed a 10% across the board budget cuts for all departments
Ronald Reagan: I think the... the state budget is... is laden with fat, and I think it should be blue penciled down until it is within our income at least. Actually, it should be blue penciled down wherever there's any fat no matter how far down it takes us.
Dennis Amundson: The Governor wasn't necessarily ecstatic about this new system happening, ah, and he could see down the road and, particularly, based upon the Department of Finance's viewpoint that this could cost millions and millions and millions of dollars.
US District Judge Spencer Williams: The purpose was to get the fat out, get out the surplus that was unnecessary and try to use the money more effectively.
Dennis Amundson: Well, in terms of the cutbacks, or the proposed cutbacks, in mental health and for a person with mental retardation, those were not popular cuts. And, um, it just caused a huge furor.
Vivian Walter: They hated us in Sacramento. We were the holy terrors. When we'd come in the door, they'd go, "Oh, God, here she comes again.
US District Judge Spencer Williams: They were concerned about their children and they were watching the programs very carefully and were very sensitive about the program. Whether they were having difficulty having had a retarded child or whatever it was, they were very intense, and so it was more difficult to send... sell them on programs we thought were improvements.
Vivian Walter: Well there was a guru, actually, who was most helpful and who has wonderful, for whom... for whom I have great respect and affection, and that's a man named Gunnar Dybwad. Gunnar was going to come to California and he let me know he had a friend named Bank-Mikkelsen, a Scandinavian, visiting with him, a very learned, professorial kind of person who was...who was internationally famous. And so Gunnar said, "Will you take us to Sonoma?" And I said, "Yes." So I took the two to Sonoma, and Bank-Mikkelsen had a fit.
Gunnar Dybwad: For an outsider, particularly somebody from a Scandinavian country where we always had small facilities, always individual care, this kind of mass regime, was of course, disgusting.
Spencer Williams: The situation is improving in California. We do have a tradition of having a large hospital with a number of patients. Apparently, in Denmark, they have a smaller cottage type facility closer to the community. We're moving in that direction. We believe that the mentally retarded, as the mentally ill, should be treated as close to their own homes as possible.
US District Judge Spencer Williams: When people criticized the system, they want to take out the worst, they want... they don't tell you about the best. The ones we've sent home. The ones we've sent home able to function in society, the ones that work on the contracts and sort out the nuts and bolts and earn a way to Disneyland. So... I get a little angry, as you might tell. But, it's easy to criticize and it's unfair to criticize.
Vivian Walter: We found, ah....residents who were naked, other residents who were ill-clad. We found toilets without seats. I mean, this is getting down to the nitty gritty.
US District Judge Spencer Williams: The concern that the patients would take them and break them into wooden seats and start using them as weapons. Really. They could use the facility just as well without a wooden seat on it.
Gunnar Dybwad: We have talked to this country a great deal about the Holocaust, and couldn't believe when the Germans that they didn't know what was going on. And they made bad comments about the Germans. And yet here, in our own institutions, long before Hitler and through the Hitler years, we had conditions that were literally like the Holocaust.
Dennis Amundson: Well, Bank-Mikkelsen was absolutely appalled by what he saw and actually ended up holding a press conference after his visit
Gunnar Dybwad: He just could not understand. It was beyond his... his imagination and that human beings could be treated. And he was right, you see. Ah, people were like cattle.
Dennis Amundson: Essentially, he said, " The State of California, you with all your riches, you ought to be embarrassed. You ought to be ashamed of yourself. In Denmark, we treat our cattle better than that.
US District Judge Spencer Williams: I don't believe that. I mean, they don't put cattle in a bed and feed them by hand for all its life. They kill them.
Spencer Williams: I don't think what this person had to say was an indictment of this administration but merely a comparison with a different way of approaching the problem in California and the United States than in his own country.
Dennis Amundson: And then there was some reaction from the administration, some unfortunate comments by Spencer Williams, who at that time was the Secretary of Health and Welfare, and it was in reference to part of what Bank-Mikkelsen saw and what the study group saw was one ward that was overcrowded women in it, and some of them naked, some of them rolling around in their own feces, and that made the newspapers as well.
And... so when Spencer Williams was asked for some, some reaction to that, ah, he said, "Well, what can you expect? They have an IQ that's about the equivalent of a household pet."
US District Judge Spencer Williams: Referring to a pet was bad, but a very, very, very low IQ unable to do almost anything that humans are supposed to be able to do.
Vivian Walter: And so Bank-Mikkelsen really wrote what he wrote—papers that were published all over the world about this terrible state of things in California, which was... It was terrible that he had to do it, but it was gratifying when he did do it.
Gunnar Dybwad: And that made the Governor very angry, and, ah, it, ah, it was a little difficult situation for some people, ah, who had been accused of having arranged the visit in order to aggravate the Governor.
Vivian Walter: Things were pretty bad, and he held a special meeting at Camarillo State Hospital—I don't think that exists anymore—to give a hearing to all of us, all... those of us who had been the nuisance makers, the complainers.
And there's a funny story associated with it. When they got there, he and his people, they found that the grass had died outside the state hospital, and I guess they wanted to make it look prettier. So they painted it, they blew that green stuff on it and painted the outside the gra...what should have been grass, they painted green.
Emmy Sokoloff: They sprayed it all green, and David said, "It's so good to see you here, Governor, because you may notice that even the grass is greener."
Vivian Walter: He was pretty mad at us. And he had a list of people. I remember him saying to one person, "Ah-hah, I recognize your name from seeing it in the papers." It was very threatening.
Edgar Pye: Reagan had the background of fantasy movies, but not what's reality in the community, and he depended on the community people to feed him, and it depended on who was feeding him where he was.
US District Judge Spencer Williams: He was conservative budget wise, but he was very interested in doing good programs for the state and helping the people that needed help. He wanted to keep the budget down and not waste it, but he was not afraid of helping people that were really in need.
Richard Koch, MD: We would recommend something, and he would say, "Well, that sounds logical and let's see that we do it," and he'd point to that. And we left the meeting very impressed and enthusiastic, but, you know, nothing ever happened. And so, ah, we were very disappointed that nothing happened, really, to change anything.
Dennis Amundson: The Governor was taking a lot of abuse in the press all over the state. Every newspaper were carrying stories on the cutbacks for the mentally ill and for the mentally retarded. Ah, there were legislative hearings where people with mental illness and people with mental retardation, people in wheelchairs would come forward with the advocates and family members, and really blasted the cuts.
Vivian Walter: I was persona non grata in Sacramento, I know that. The Governor was very angry, and things just progressed from there, and we finally got around to Lanterman.
Dennis Amundson: Lanterman chaired the powerful Ways and Means Committee. It was two years where the Republicans were in power, so Frank was the chairman of the committee. Why that was significant was that he had real clout with the Governor.
Vivian Walter: Frank Lanterman was an interesting man. Among other things, he lived at the Senator Hotel, which was the big hotel in Sacramento in those days; it is no more. When we really wanted to see Frank, we would hang around the lobby around 5 o'clock waiting for him to come home. And when he'd come home, we would just hop in the elevator with him.
So we'd ride up and make... we'd push the top button so it would give us longer to ride, you know. We knew him, so we'd say, "Mr. Lanterman, hello." And he would say, "Hello, Margarete. Hello, Vivian," whatever. And so, you know, he was civil to us, but he didn't really want to talk to us, but he had to, we had him trapped in the elevator.
Dennis Amundson: Lanterman was very supportive of the parents. It was the parents who came to him in the first place. It was the parents who wanted those options. It was the parents that wanted programs right in their home communities, rather than being on a waiting list to get into state institutions.
Margarete Connolly: I think Frank really got caught up in this whole business of mental retardation and the families. My instinctual feeling is that we loved him for what he was doing and he needed that love, you know? It became a very personal think for him, very personal.
Dennis Amundson: He couldn't stomach these cuts. He essentially told the Governor, "This is crazy. You can't do this, and you're not going to have my support in getting your budget passed unless you restore these cuts."
Margarete Connolly: He was the Governor's finance man in the legislature, and the Governor was not going to cross him, so that what he wanted, he got.
Dennis Amundson: He had to carry the Governor's budget proposals and shepherd it through the legislature, so Reagan needed to work with Lanterman and Lanterman used that.
Arthur Bolton: I remember him on the day... on the phone one day. I was sitting in his office, and the... I think the... Governor called. And Lanterman was saying, "Now, Governor, fine. I'll take care of that. Now, my mental health budget... Let's not, you know, let's not let those pinheads in the Department of Finance mess this up. I want... We need to have, you know, It's very good, it'd be very good, Governor..." you know, I mean, you know, he...
Dennis Amundson: Lanterman pestered him every day and eventually, essentially, all of the cuts in the developmental disabilities arena were restored.
Vivian Walter: Out of this, Frank Lanterman took hold and he began the process of forming what turned out to be called the Lanterman Act.
Dennis Amundson: What the Lanterman Act really did was to say that there should be one Regional Center for every one million of California's population, ah, and so it was going to go on and on and on.
And it... and it was going to therefore be a real threat to the state institutional system, as more and more money would go to this community system of care, it's got to come from someplace, and it was going to come from the downsizing of... of state institutions.
Richard Koch, MD: We didn't have good relationships with the state employees, as a result, because we were displacing state employees in terms of hiring, and so they felt their jobs were threatened. Well, we were threatening their jobs.
Edgar Pye: One day I was sitting quietly, trying to figure out something or other at my desk, I got a call from the Attorney General's Office in Sacramento, saying that they're delegating a man on their staff to work with me and the Regional Center to deal with the suit that's just been filed against us by the CSEA, the California State Employees Union.
Dennis Amundson: It was about the time when Lanterman was really pushing the bill through and it looked like now it had some chance of getting passed, which got CSEA's attention.
Walter Taylor: There is, yeah, there still is the provision in the state constitution which generally paraphrased says that if a particular service can be performed by a civil servant, it must be performed by a civil servant.
Richard Koch, MD: I remember testifying, mostly to the effect that if we had to hire state employees at the Regional Center, we really were becoming a state agency and we weren't part of the community.
Aseneth Young: I remember sitting in the audience while he testified, and a woman in back of me tapped me on the shoulder and said, "He's doing very well, don't get so tense," because I was just tightening up,
Interviewer: Why were you so tense?
Aseneth Young: Because it was... It needed this to go on, and I was afraid things would... they'd stop it. Could have.
Interviewer: Why were, why were you afraid?
Aseneth Young: Well, you can't depend on the government too much to come through with the things you need.
Dennis Amundson: It couldn't have worked if... the Lanterman Act was stopped because the option and what the employees union wanted was for the state to run those regional offices. Lanterman found fault with that, ah, in that he really thought that, ah, community-based boards were... were the best alternative so that there would be local control, a real buy-in. He wanted a buy-in, particularly by the parents.
Walter Taylor: You've got a whole lot of civil rights things here, that transcend everything else. And they're not easy to resolve. It's a matter of weighing one social interest against another and deciding which one is going to be paramount.
Judge B. Abbott Goldberg: I believe enough has been shown to demonstrate that the Waldie bill is not a device to weaken or destroy or evade or subvert the effectiveness of the civil service system.
The fact that a particular occupational skill can be provided by civil service does not mean that the function of a program can be achieved through civil service. To use a homely metaphor: The fact that one can buy the ingredients does not prove he can bake a pie.
Dennis Amundson: I think it was a collective sigh of relief by those in the audience and obvious despair on the ... on the part of the union representatives and their attorneys. But we were euphoric, and Lanterman was euphoric.
Walter Taylor: I mean... Let's face it, the judge decides what he wants to do and then he finds a legal reason to do it. They do it every day. It's... It's understood. You can complain all you like about what judges decide and say that's not the law, but the fact is, the law is what the judge says it is. And in this case, Abbott Goldberg looked at that provision of the constitution and said the state can do it.
Judge B. Abbott Goldberg: I can only quote my wife. She says, "Thank God, for once you did something right."
Slide: On September 4, 1969 Governor Reagan signed the Lanterman Act into law. With his support, the Regional Centers continued to grow throughout his two terms as Governor. One year after he left office there were 21 Regional Centers, one for every million citizens—just as Frank Lanterman had envisioned.
Michael Pasquini: I'm here in the community and I like it. Everybody said to me, "Oh, if you move out, you're going to get stuck. You're going to get stuck. You're going to get stuck." I'm not stuck.
Interviewer: Why did you want to join the church?
Steffie Taylor: Because it's a family. They don't discriminate.
Interviewer: Why is that important to you?
Steffie Taylor: Cuz people should come to church and not be discriminated against, no matter what color, handicapped or white. Everybody has the right to talk to God no matter what.
Lucy Sokoloff: Hopefully, I can continue working here because it's psychologically very good for... very good for me. Yes. Very good for me.
Vincent Jackson: This place is the most wonderful place to come to and... and we have to... I mean, it's... it's a nice place. I mean, I wouldn't want to go nowhere else. If we decide to remodel and we have to be out a couple of months, fine. And then... And this is what this place is about. It's creativityness. It's not about nothing... nothing else.
Interviewer: When you look back at all this and all that you've done, do you feel like you've changed the world?
Vivian Walter: Oh, yes. I mean, if things were the way they were when he was born, it would be a disaster. I would be terrified.
Daniel Collins: The work that the Regional Center... the Regional Centers do to humanize these people and in so doing, humanize the parents and humanize the bigger, the larger community.
Interviewer: Lucy, what do you...what do you think about what your parents did? What do you think about all of these...?
Lucy Sokoloff: All was fine. They did the best they... they can. Maybe they weren't that perfect. We're all not perfect. All not perfect. We all have ups and downs.
Slide: Reforms in the wake of the parent movement of the 1960's reduced the number of State Hospitals, renamed Developmental Centers, and improved the lives of the people who reside there.
Slide: Working with the Regional Centers, five remaining Developmental Centers continue to offer care for approximately 3,900 residents.
Slide: The two pilot Regional Centers served 559 people in their first year. Today 21 Regional Centers serve over 150,000 persons with developmental disabilities in their own communities.