PRACTICE AND POLICY LECTURE SERIES, SEPTEMBER 2013 û OKLAHOMAÆS TRIUMPH FOR CITIZENS WITH DEVELOPMENTAL DISABILITIES: INFLUENCING THE WHOLE WORLD.

No Audio: James W. Conroy, Ph.D. The Center for Outcome Analysis. www.eoutcome.org. September 24, 2013.

Dr. James W. Conroy: This is all we do nowadays, isn't it? Well because the story is happy, it's a very serious topic but the outcomes are so happy, I will be light-hearted and I hope you enjoy this story. Beginning I wanted to talk about influencing the whole world because that's what's happening now. What happened here in Oklahoma is now helping the rest of the world to follow in America's footsteps, which is incredible and a great honor for Oklahoma and all of America. So I'll get to that. 

But three points - my dad was a salesman and he told me things like, "Just leave three points, you know, because people will stick maybe three points." Here they are, a tribute to my dad, typewriter salesman. I picture him walking around Washington D.C. with an 80 pound IBM. 

(laughter)

Dr. Conroy (continues): And he did! He was 6'4" too. Something wonderful happened here in Oklahoma. Alright most people know that. There have been films about it. Reba McEntire did a piece on this. So something really splendid did happen here and almost nobody knows about it and now it's influencing the whole world. Those are the three things that when I walk out here I hope you will remember. It's a terrific thing and I had a little part of it, so again, it's just such an honor to be able to share this back with you. 

Here's my outline. First a little history and trends. Second a word about how I got into this field because I found out that's always of interest. What are you doing up there? This PhD with a beard. You're old now. What are you talking about? How did you get into this field? So I'll tell you that a little bit. The science - how do we know that people are better off? That's the ultimate bottom line. Better lives for people. That's what all social services are about. And the economy of scale concepts. The big mistake we made in human services over the years. And finally, I'll just say again, and explain how Oklahoma's experience is now being shared across the planet. 

What happened in Oklahoma? Well for background most of you know a large public institution for citizens with developmental disabilities was sued, downsized, and closed. Homeward Bound versus The Hissom Memorial Center. That was the name of the lawsuit and it began in 1985. Trial in 1987 and Judge James Ellison handed out a decision in 1987. 

His opinion was July 24 and this was from his opinion so... it's so powerful and so worthwhile it's worth reading. "This trial court, sitting in Oklahoma in 1987, upon consideration of the overwhelming evidence, must conclude that constitutional, federal, and statutory requirements now dictate removal of the institution as a choice of living environment for such individuals." 

That's an incredibly courageous statement. Unique courage in that year. A true civil rights issue, it was ahead of its time. The Americans with Disabilities Act came later. Judge Ellison here lost friends because of this decision. People thought it was so wrong and so misguided. He was a member of a country club. People wouldn't play bridge with him. He told me this himself and his wife. He really stepped out and made a civil rights decision. And it was following some other decisions but it was unprecedented in its power. 

Hissom closed in May 1994 ahead of schedule. Which in other courtactions, by the way, usually it takes years after the deadline. In Pennhurst, Willowbrook, Partlowe, Plymouth in Michigan, all the other facility closures were slow and it took longer and there were always gliches. Oklahoma went ahead of schedule and that's doubly interesting because Oklahoma didn't have an infrastructure in the early 1990s. Not much. 

So what's the purpose of human services? I wanted to say this out loud and strongly: improve lives. We got to think again and again. What do we use our tax dollars for? For that. To figure that people are better off because of what we do. The people who work in DHS and the people in all the divisions who have to do with human welfare. That's what it's about. Are people better off? 

And I think we have to ask ourselves that every day, every year, every month. Are people better off because of what we do? And that's where I wound up in this dance we've done for 40 years. I've been measuring that and it's been a joy because people are better off. Is it measurable? Well, yeah. I tried to make a career out of it so I'm going to say yes. 

(laughter) 

Dr. Conroy (continues): Worse I got a PhD out of this, so definitely yes. 

(laughter) 

Dr. Conroy (continues): I was once in a court suit in Ohio to close an institution and I was asked about my dissertation for the PhD and I was asked, "Do you think your conclusions reached in that PhD was about the size of group homes? How big should a group home be? Do you think your conclusions are still correct?" and I said "Why are you going to take it away? I really need that PhD." 

(laughter)

Dr. Conroy (continues): Anyways this measure, well the answer's mostly but not completely yes. Let's not suffer from too much hubris here. We can measure a lot about quality of life but not everything, so let's not pretend. We don't know how to measure self-concept from people who don't use any kind of language. We don't know how to measure love. 

And I'm struggling now with colleagues in Ohio and Michigan and all over the place. I'm struggling now to measure what we fail to measure in all the research I'm about to show you, which is relationships. The depth of real connection to other human beings. We're not good at measuring that. Nobody is. If it was easy, somebody would have done it. 

And for the next wave of change in our field, the field of disabilities, the segregation that people experience during the day in sheltered workshops and segregated day centers, it's going to be terribly important to measure relationships. So not everything's measureable and we keep trying to push the frontier to measure more and more so we can truly be scientifically accountable to the tax payers. They have to know. You're taking our tax dollars, you're spending it on behalf of people. Is it working? 

So I have founded the Center for Outcome Analysis and that also reminds me - outcomes, I like to say outcomes are changes in life. Qualities of life like integration, productivity, independence - those are qualities of life. But a change is an outcome. And every time I say that I think, "Yep there he is. I know that guy. He's the old guy with the PhD and a beard. He's telling you this is what this word means." And I used to see this guy when I was a young man. I'd see him all the time and now it's me. 

(laughter) 

Dr. Conroy (continues): So the ultimate unit of accountability for social programs is outcomes. It's that people are better off. That's how we use our tax dollars and today the case of segregated models has to be definitive. If you are going to segregate, you better have a darn good provable reason, and maybe even then. 

So how do we know there's a better way than institutional segregation? And of course it's 40 years of studies and learning about what's really important to people in their lives. The source of the institutional model came from a guy named Samuel Gridley Howe in 1948. Took a vacation in Germany and came back with this, something he had seen. An isolated, self-contained model program in Germany. (swishing noise)Alright who put the sound effects in my Powerpoint? 

(laughter)

Dr. Conroy (continues): Oh yeah, that was me. I'm still trying to get them out. The vision was a self-sufficient agrarian community and people would be freed from the pressures of normal life in the community where it was thought that regular society was too rough and too harsh and too mean. So let's remove those people, put them somewhere safe, and have them grow their own food and be protected. 

That was the original motivation for America's institutions and all over the world. The first public facility might have been Fernald outside of Boston in Massachusetts. And this is a picture of the institution I'm most familiar with, Pennhurst, in 1915 with hundreds and hundreds of young people lined up for a meal, each with a napkin. And I think this picture is stunning because I said I would say some light-hearted things and I can't help it. I don't know how they got these kids to sit still...

(laughter)

Dr. Conroy (continues): ...because they didn't have medications like we have. But Samuel Gridley Howe by 1866 was saying things like this. He introduced the idea of institutions in 1848 and we started building them and opening them and he said, "All such institutions are unnatural, undesirable, and very liable to abuse. We should have as few of them as possible." This is the first statement of inclusion I've ever seen - "Such persons, persons with disabilities, should be kept diffused among sound and normal persons." 

Not the language we would use today but what it means is, it's not a good idea to separate those folks. They're our brothers and sisters. They belong with us. It's the first statement. It was 1866. Samuel Gridley Howe, this guy, was also the guy who set up the school where Helen Keller learned to speak and write and become who she was. So he was quite the expert in the 1800s. But when he brought the institutional model to the U.S., we built them and we kept building them and when he said "Oops, bad idea, slow down," we didn't slow down. 

No Audio: ô150 Years of Institutionalizationö û a bar graph showing a steady increase in the number of persons housed in institutions until 1969, when the number of persons in institutions began to steadily decline.

In fact, we increased the number of American citizens in our institutions constantly until about 1969. So that again in the spirit of, what are you going to remember after Jim leaves, that graph is a good thing to think about. That's what America did in terms of segregation for people with intellectual and developmental disabilities. That's what we did. I also am very fond of pointing out that I got out of college right there and started working in this field. 

No Audio: Indicates on bar graph ô150 Years of Institutionalizationö the period after 1969 when the number of persons in institutions began to decrease steadily.

(laughter)

Dr. Conroy (continues): See. I'm just saying. I can get away with that because none of the people who really did this are here in the room. Well I noticed down here at the extreme right-hand side there's a slowing down of deinstitutionalization. There are many reasons for that but one of them is the fear about Medicaid and health reform. There was a lot fear about Medicaid in the entire past decade. 

And so states were very timid about changing the fundamentals of their service systems. So deinstitutionalization slowed down. There are other reasons. Like some people say the folks who are still in the institutions in America had the most urgent needs and they were difficult to support in the community. I'll actually speak against that theory later. 

Now if you put together the decline of institutions here from 1952. That's the peak in 1969. And then institutional support models in the United States decreased and decreased. That's just a more recent graph. Decreasing, decreasing. The rise of community providers is here and that began, largely and was sustained largely because Medicaid passed a new way of spending money in community programs in 1981. 

Right there and the first such program in Medicaid was called the Katie Beckett Waiver Program. Katie Beckett drowned and was rescued and needed constant care and when she was in a hospital she was costing $300 a day and her family wanted to care for her for under a $100 a day at home but the regulations at the time wouldn't allow that. Katie had to be in a hospital setting, an accredited hospital setting. 

So, after much complexity, the Medicaid Waiver Program was created under President Reagan. And it was a cost savings, cost effectiveness program. Right about 1981 it helped spur the growth of community living and working and recreating in the United States and that is a fantastically important part of our history. 

We got into, we in developmental disabilities, we got into Medicaid and that was after 100 years of fighting to get out of domination by the medical model. Ironic isn't it? All the institutions in America were operated and supervised by physicians and nurses. That was the medical model of the age. 

And then around 1981 we jumped right back in to the medical model, at least for funding and we are still battling that influence. The fact that Medicaid is the driving force in our funding mechanisms is a problem. Because most of the people we want to support aren't sick. They don't need hospitals. They don't need doctors. They need something to do that is productive and rewarding and a place to live and relationships. It's not a big deal. It's not really a medical problem. And yet, we're getting a ton of money through Medicaid so it's kind of addictive and an irony that we have to face. 

Very big versus very small. Sometimes late at night you come across some clip art that's irresistible. So big versus small. I think it's a settled issue through media exposure, and scandals, and court decisions in all the past years. Institutions have declined as we saw on the graph and community options are now pretty well preferred and it's pretty well universally understood that it's a preferred option in every way. 

What did we do? Well we moved from the large segregated settings to the small integrated settings and I'd like to mention that for over 100 years, what do we do with people like Mike? Mike lived in Michigan and has his own story but generally we tended to diagnose him and exclude him from school. 

(inaudible) 

No Audio: Tell his (Mike) parents that he needed medical care.

We said he would never learn and heÆd bring no joy to the family and he needed to live in a large facility with people like himself. That was the professional mantra for 100 years or more. Change kind of began in 1979. This is where I insert a personal note which is that I got out of college in 1970 and went home and I had gotten a special interdisciplinary major in physiological psychology and it was fascinating. It was wonderful. I studied the human brain and consciousness. Wow. And it was the 60s. Whew! 

(laughter) 

Dr. Conroy (continues): I'm okay now though. 

(laughter)

Dr. Conroy (continues): I got home and my mom said, "What can you do with a degree in physiological psychology?" And I remember literally saying, "Oh you can do plenty, you can... How much did Yale cost you guys?" 

Well anyway I went to the Maryland State Employment Office and had no idea what to do but I found a strange job at the employment office with a consulting firm doing a study of a new law, a national study of the new law. And that was, as Joanne mentioned, the Developmental Disabilities Act of 1970. It had a longer name but the term was coined really in 1970 by the U.S. Congress. Developmental disabilities combined what was then called mental retardation, with epilepsy, cerebral palsy, and related conditions. 

And that's what happened in 1970 and it was done because those groups were fighting for funding all the time. And it was thought that if they'd get together there would be less competition and more cooperation for the money. So right at the peak of institutionalization, I think I was getting feedback. Let's see what happens over here. Right at the peak of institutions and, as I said before, everything that happens since then is, you know, my responsibility, so we, I...(exaggerated throat clearing) 

(laughter)

Dr. Conroy (continues): What did Ted Turner say? He said "I'm not perfect, I'm not perfect, but if I just had a little modesty I would be perfect." 

(laughter) 

Dr. Conroy (continues): So by pure chance again I was working as a 21-year-old kid in this consulting firm in Bethesda, Maryland and I had to draw a national sample of facilities to go and visit to find out more about people with these three labels: mental retardation, cerebral palsy, and epilepsy. And I cut up every directory physically with scissors, every directory of programs in the U.S. and put them in a big cardboard box and each employee of my company pulled them out and that was as close as we could get to random at the time. And I got charged with pulling the national sample because I was the only guy in the company who had taken statistics. 

(laughter) 

Dr. Conroy (continues): And that was all I knew how to do. So out of the cardboard box I pulled out a shred of paper that said Pennhurst State School and Hospital and I got in my father's Chevy and drove up. 21 years old and that's the kind of stuff I saw. Beds were six inches apart. There were 2,800 people there at Pennhurst State School and Hospital. Right near Valley Forge oddly enough. And I was surprised and sickened. 

And that's the kind of.... I walked into a room like that. There were about 50 people almost all naked and screaming and self-stimulating and there were three staff people in white jackets in a glass-enclosed booth in this dayroom and I just couldn't believe it. And that's, as I said to some colleagues earlier this morning, that's why I'm up here. That's why I'm still in the field. 

I was involved in the Vietnam War, the Civil Rights Movement, the Women's Movement and I was right in the middle of that. You know, it was 1970 and I was at Yale University and we had big stuff going on. Demonstrationsand things. But when I saw this, I just, it caught me and I said, "I got to do something about this." This was unbelievable, in the richest nation in the history of our species, that we could have that. 

And we have done something and that, too, is why I'm here. Something wonderful. So what I saw was about 2,800 people in a place designed for 700. I saw people left in cribs all day and night with no attention. Broken bones untreated. Tooth-pulling - if you bit someone at Pennhurst, you'd get punished. If you bit someone again all your teeth would be pulled out. By the time I got to the court case, we had a court case too. By the time I got there about 30% of the people had no teeth and we wondered why. We also found out that half of them were on tooth-brushing programs because everybody got tooth-brushing programs. 

There was no individualized treatment in these days, so I reflect on the awful past in order to strengthen what we've accomplished - which we'll get to. Sorry to go through this painful stuff but I actually saw people sprayed with a hose with a drain in the center of the floor and that happened in Oklahoma, too. I see heads nodding. I see there are people who lived through this with me. So why treat human beings this way? 

I found out in 1968 from the first journalist to expose this I found out that the average cost of a person at Pennhurst was $5.90 a day and this newsperson, who you can see on my website, which is devoted to making a museum, someday, a museum and a national center of remembrance in D.C., you can see this five nights of videos from 1968. 

Bill Baldini was the first person who put this stuff on TV and he showed us that the average cost of supporting a leopard at the Philadelphia Zoo was $7.15. In the richest nation on Earth. That's the values base that we started with back in the 60s. 

So I believe that we should improve the institution. I spent 12 years working on that. In a model institution, lots of money. And what I learned, just to cut to the chase, what I learned was we could make a better institution but we never could make it quite good. Better but not good. 

So we showed that there were small improvements for people but then around the same time I got involved in studying community programs. So we got a big surprise in 1978 when we were trying to make better institutions. U.S. Federal Court, the District Court of the Eastern District of Pennsylvania, Judge Raymond Broderick, declared Pennhurst to be "unconstitutional by its very nature." Because it was designed and it opened in 1908 with the title of Eastern State Institution for the Segregation of the Feeble Minded and Epileptic. Its name was "for the Segregation of," not for any particular reason. 

Nobody committed a crime. Why do you take people and lock them up when they've done nothing wrong? Well it was specifically designed to segregate. And in the court case we were able to prove, again being an under-30 kid researcher, I got involved in this by pure dumb luck, and was able to get enough data to prove that the average person who went to Pennhurst went in with some skills and then lost them. They got worse and worse, year after year. 

So you cannot take away someone's freedom in this country unless you give them treatment that will help them. Unless they have committed a crime. Well we gave them treatment that hurt them. So that's what we were faced with in Pennsylvania and all over the country. 

The judge ordered that everybody should get a chance to live out in integrated homes and regular communities and I was a skeptic because what we had done already in the U.S. and mental illness, deinstitutionalizing people with mental health issues, had been a disgrace. It's still a national debacle. We really betrayed people with mental illness when we let them out with 30 days of medication but no community mental health. 

The Community Mental Health Act of 1963 was passed by the Congress but never funded. So we didn't build a community mental health network. But we still let people out and it hasn't been easy. So I thought this would be a mess too and that's why I wanted to do research on it. I didn't want these people to be further harmed. Further insulted in their lives by being abandoned in a community. 

So I was lucky enough again to get involved in the Pennhurst Longitudinal Study. The biggest study yet done about these issues. And I got to track 1,154 people for years and years. It's still going on today. We still visit all those people today. We visited every person every year and surveyed every family every year. Measured qualities of life, satisfaction, costs and it's still going on. It turned into quality assurance, which happened in Oklahoma, too. So the purposes were to track 1,154 people and find out the answer to one, just one, question. And that's what nobody knew back in 1978. We didn't know. I didn't know. I thought they'd be abandoned and harmed. In what ways, how much, and at what cost? 

No Audio: ôThe Outcomesö û Adaptive behavior, Challenging behavior, Health, Health care, Medications, Services, Productive activity, Employment, Physical quality, Self-determination, Individualization, Integration, Third party opinion, Personal interviews (satisfaction), Family surveys (satisfaction).

These are some of the outcomes that we figured out how to measure by looking at the research literature on quality of life up to 1978. We figured out you could measure a lot of stuff, pretty well. Like I said, nothing perfectly and some things not at all. But for the most part, a lot of these were pretty easy. 

Adaptive behavior and challenging behavior, medication use and service delivery. Employment is easy. You measure hours worked and earnings and so forth. Qualities of the home, self-determination, choice making. It took us quite a while to learn how to measure that. Especially for people who don't use traditional language. It took a while but I think we got a reliable measure now. Individualized treatment, integration and so on. There you go. 

That's quite a transition there, Jim. Powerpoint. What kind of people were there at Pennhurst? I am just doing this because they were very similar to the folks at Hissom, except in age. People at Hissom were much younger. At Pennhurst the average age was 39 and they had been at Pennhurst since they were teenagers. That's typical. Most people in America went to institutions when they were teenagers. The family could keep them at home and then professionals, like me, kept telling them as they became larger and more difficult and they weren't allowed in public schools. Remember, this is crucial: when I grew up, none of these folks were allowed in our public schools. What a change there's been. 

They were two-thirds male. About a third with seizures. There's blindness and deafness, and inability to walk, non-verbal folks, people who couldn't control their elimination functions. 40% reported to be violent. In the old terminology, 86% of these folks had the label "severely or profoundly retarded." That's old terminology now. But it means, it used to mean, IQ below 35. 

So they went into community living arrangements with three people. With 24-hour staffing, licensing and all the traditional stuff that we now know about, which is taken for granted today. What happened? Well I'm just going to skip the Pennhurst study because I want to get to Oklahoma but we did find that people grew and learned and developed in self-care abilities, independent functioning. 

They took a big...that is a challenging behavior, just a second, yeah I skipped one. But challenging behavior kept getting better and better and better. High scores are improvements on this scale. So even though we were told that people at Pennhurst couldn't come out because they had aggressive, life-threatening, self-destructive behaviors. They actually did come out and kept improving year after year after year. They lived longer. 

If they had stayed at Pennhurst by 1989 about 220 would have been dead at the standard life expectancy at Pennhurst. But when they came out, turned out that only about 120 were dead. About 100 people in 1989 were alive who would've been dead otherwise, according to statistical predictions. This is actuarial science like the insurance companies use. 

Life expectancy. It's a terrifying thing, you can now look up your own life expectancy all over the internet and figure out. My best friend at home has been in this field for years and years. He's 87 and he looked up his life expectancy. He says "Jim, I've got 2,000 days left. We've got to figure out..." 

(laughter) 

Dr. Covey (continues): This guy, great guy, he had his 100th birthday party when he was 80. People showed up and said, "What? What?" He said "Well I'm having it early in case you can't make it." 

(laughter)  

Dr. Conroy (continues): The costs, we studied costs, we found out the cost of Pennhurst, and this is the first cost study of this kind of thing ever done. These studies have been done in Oklahoma now. But we found out the cost of the institution was much greater than the cost of supporting the same people, twins in the community. Same age, same sex, same level of then called retardation, same medical concerns. I mean matched sets of twins. The institution cost much more than the community and more later. 

Then in the 90s, the Oklahoma Quality Assurance Project began. We wanted to do the same thing that we did at Pennhurst, which was follow all the people and find out one by one, face-to-face, year after year, are they better off? And we did. And all I'm going to do is show you some of the stunning results. These are powerful and I think you won't forget some of them. 

The Center for Outcome Analysis designed it and lent our instruments. OSU implemented it. It was modeled after the Pennhurst Study and ran until just recently, when it stopped a year or two ago. We learned a great deal and there were unique features in Oklahoma. Oklahoma moved people out of Hissom Memorial Center, using the smallest homes anybody had yet tried in the U.S. So they were small and there was the most choice up to that time. Families were given a choice and a say in which home, what kind of staff and so forth. There was more choice here than in Pennhurst or any other deinstitutionalization movement up till that time. And there was great emphasis on work and employment here in Oklahoma unlike, incomparable to any other place. 

These are some of the things that will stand out and I think you will walk out remembering what Oklahoma did that was different and remarkable. And as a scientist who had by now I'd done six or seven studies in New Hampshire and Connecticut, Colorado, Florida, North Carolina - by this time I already knew that what we were seeing in Oklahoma in the 90s were the strongest positive outcomes we had yet seen. 

Like adaptive behavior development. This means growth toward more independent functioning. The average person leaving Hissom from 1990-2000 went up statistically significantly about 3% on the scale, a 100-point scale. So that's a positive outcome. And remember they'd been at Hissom for 20 years average. So this is remarkable that people can still grow and learn as they did at Pennhurst. 

After losing skills at Pennhurst for 24 years, people came out and started gaining skills. You can't keep people down. Human potential is always there. That's one of the happiest things I ever learned in this research. So people became less dependent. 

They became more able to control their own challenging behavior which means control by yourself. Control of challenging behaviors is control, internal control by yourself and the average score went up from 86 to 92. Again highly statistically significant on a 100-point scale and higher scores are better. People became sharply more able to control their behavior. 

Choice making, which is the mantra of the 90s and the past decades. Self-determination. We found, here is a graph to summarize what we found, from 1990-2000. The red bar, the red bars are average scores for all the people in the class in the year 2000 and the blue bars are their scores way back in 1990. The red bars are bigger than the blue bars which means people improved in choice making in choice of friends, having friends visit, what clothes to buy, choice of foods, what to do in free time, what clothes to wear, how to spend personal money, having friends visit anywhere they want to in the home. These are some of the areas of really sharp increase in quality of life. 

And that was measured when we tested reliability. We published articles about the reliability of these instruments. A lot of people that we visited, we couldn't talk to directly and I'll say something about that in a minute. But these are reliable scales, so we're pretty darn sure that the class members gained in choice making over their time in the community. 

No Audio: ôIntegration: Getting Out & About û Per Week.ö 1.8 times in 1992. 8.2 times in 2000.

We also found out that they became more integrated. Now this graph represents getting out of the house. It does not represent the real meaning of integration which is forming relationships and having real friends and neighbors and people who support you and people who care about you and romance. It doesn't include all of that. This is just an over-simplified index of getting out of the house and you can see it went up by a factor of four. So people are getting out much, much, more often. I counted myself on this same scale and I don't get out that much myself. 

(laughter) 

Dr. Conroy (continues): But I'm here. So that's something. The voice of the class members themselves. We attempted to interview every person every year in the Oklahoma Quality Assurance Project. No matter whether somebody said "Oh don't bother, she can't talk to you." Didn't matter, we tried. We had picture books. We had all kinds of devices set up. We tried, and actually the most advanced work in getting direct interviews in the country was done in Oklahoma with picture books and assistive devices to try to get people to express what they liked and didn't like in their lives. So we went very far. 

We attempted every visit regardless and we used everything we could think of. And about 15,000 attempts at interviews over the years here. And about 25% of the folks were able to answer us in some way. And when you put it all together over these years and ask, "What happened to your overall life satisfaction?", it went up ten points over these years. Ten points. Because these scales tend to start with all of us we kind of start, most of us say, "I'm okay. I'm pretty happy." So we start at about 70 or 80. That's where we all start. 

So this ten point gain is actually bigger than it looks. It's kind of huge. So from 85-95 in ten years. We now know that the people that were able to communicate in traditional ways with are much, much happier where they are and they say so. 

But, oh, I love these. "If you had one wish..." We asked everybody in studies all over the U.S. for 20 years, "If you had one wish, what would you wish for?" We got all kinds of stuff. Just to categorize them in a boring way, we got wishes about the family. Move closer to mom, move back to the hometown with family. We got wishes about other relationships. I want to have romance, I want a girlfriend, a boyfriend, marriage, visitors. I want relationships. I don't want to be lonely. Wishes about moving. I want to get an apartment, move to another place and this is a quote, "I want to get out of this dump." 

(laughter)

Dr. Conroy (continues): My favorite of all time was in California, not Oklahoma, but I just put it up on this slide because it's so cool. Some of our instruments were a little bit, you know, wild. I mean, we had a 55-page interview instrument in California and it took 92 minutes on the average and we could spread it out over several visits and, you know, you only had to do it once a year. But still, you know, 92 minutes that's a lot. 

One guy couldn't read but he wanted to answer every question himself and he didn't want any help. So every question had to be read and every checklist had to be read carefully and anyway it was somewhere around 3 1/2 hours when my co-worker Don got to the end and he said well "If you had one wish what would you wish for? This is my last question. If you had one wish, what would you wish for?" 

No Audio: Indicates answer on slide ôI wish youÆd leave.ö

(laughter) 

Dr. Conroy (continues): I got your self-determination right here. We complied with his wishes, I'll tell you that. Even more dramatic we surveyed every family almost every year in Oklahoma and we asked the families, "What's changed? Are things better or worse? How happy is your relative? Would you want him or her to go back? What's most important to you?" and we got about almost 50% response in just one mailing. So families care. 

And these are families who were largely, you know, isolated from their loved ones while they were at Hissom. Family contact, first of all, just about doubled after placement. That didn't happen anywhere else that I've ever studied. That only happened here. I've published an article about it but I still don't exactly know why. But I have talked to the court monitors and the people involved with DHS who implemented all of this. There's a lot of attention to involving families here. Much more than anywhere else, I think. And that's why we had choice, because families who were invited to help pick homes and staff and that I think is probably the reason but I don't know for sure. But family involvement doubled and that didn't happen anywhere else.

We asked families, "Are you in favor of this or not?" We asked them at first and now and the families went from pretty, pretty... the blue, the blue bars are pretty evenly distributed but look at the red bars. Look what happened after, after it happened. Look at the red bars. They're all at the top, strongly in favor of community living. Just a gigantic change. This is from night to day for me. Evenly distributed before, blue, to the after, red. 

This is rare in social science. I've done it ever since I got that degree in brain research and went into social science which actually has applications. I rarely have seen survey responses like this. This is from night to day. This is stunning and powerful. You don't get stuff like this very often. 

And we asked families about qualities of life. How are people better off? Well I sorted this graph in terms of where the largest changes they saw were. And here the blue bars, I unfortunately reversed them. The blue bars are now representing the present or the year 2000 and the blue bars are bigger than the red bars here on every one of these quality life areas. And I'll just name them because you can't see them in the back. 

Privacy, the biggest change. Overall quality of life, second biggest. Making choices, third. Getting out, comfort, work or day programs, daily routine, happiness. Those are the things and every single one of these is off the charts statistically significant. So that's really compelling evidence. You just can't ignore this kind of stuff. 

About the issue of work. Work is of great concern now. It's a hot topic. In fact, three states have signed consent agreements with the Department of Justice to reduce or eliminate reliance on sheltered workshops and sub-minimum wage payment to people with development and intellectual disabilities. So where we went in the 70s and 80s to reduce reliance on segregated residential settings, the country's now headed toward finding a way to reduce reliance on segregated day activities. So employment is a tremendous issue right now and I want to tell you with great glee that Oklahoma... I can name Oklahoma, but the other state is secret.

No Audio: On the slide, there is a silhouette of another state that is obviously California.
 
(laughter) 

Dr. Conroy (continues): We compared employment outcomes of deinstitutionalization movements in two states and both had done huge, massive deinstitutionalization movements and the difference has been stark. I actually had to present these in years gone by without naming the states, so I put up these and said see they're secret, I can't tell you what states they are.

(laughter)

Dr. Conroy (continues): Clearly I don't work for the NSA. Community integrated employment after deinstitutionalization. Misspelled, Jim. Argh. You know, I can read a novel and pick out misspellings. I can't help it but when I make them... well. 

Alright integrated, Oklahoma, State 1. We tracked 403 people. When we visited, 128 had real jobs. That's 32%. In California we tracked 2,143 people and only 99 had jobs. That's 5%. When I say community integrated employment there's lots of models of this supported employment, competitive employment and job crews and all kinds of models, but the idea is it's not in a center where you're only with people with disabilities and you're making a real wage instead of... you know, the average take home pay for a person in a sheltered workshop, the last national report I saw, I think was about $2 a week. That's the average because most people were zero. 

Anyway sub-minimum wage is permitted under U.S. law. It's the only place it's permitted except prisons, that I know of. Correct me if I'm wrong. I bet you know that. But you can get a sub-minimum wage certificate for a sheltered workshop. But Oklahoma, from the very beginning, decided that apparently employment was the desired outcome and they just, Oklahoma you went way past the dreams of other states. The only folks close were in Connecticut at about 15% in the 80s and 90s. At least, as far as I know. 

So we wondered what could explain this. Could it be difference in people? Maybe the people at Hissom were younger because it was originally a children's institution. Was it gender? Was it ethnicity? Functional level, ability level? Anyway we're researchers so we tracked down every one of these and found out nope, nope, nope. It wasn't that. Nope, nope. Both groups, California and Oklahoma were comparable on all these things except age and we used mathematical techniques. Nope, it wasn't any of them. 

None of them and that left the only thing we could come up with to explain it which was leadership. Oklahoma's leadership in those years decided that it was important for people to work and to get paid. And if there's anything that contributes to American citizenship and freedom, freedom to have friends, and move around and go places, do what you want, it's having a job and making some money. 

So Oklahoma did something spectacular and it hasn't been matched yet. I really seriously believe all the talk about employment in America should come back here and learn from what happened in Oklahoma. We had, I saw satellite training sessions going on in the 90s all across Oklahoma to get people to figure out how to find customized, self-designed, unique employment opportunities for what people really like and cared about. Like working in a tire factory because the guy liked cars. You know, just creative stuff. 

This is not something that comes easy to the traditional rehabilitation agency employment counselor. They don't generally do this for people who have limited verbal ability or maybe have a touch of being on the autism spectrum. People who are different, that's different. It's difficult but it can be done. That's what was so exciting about this. 

About all this research I just wanted to say, the test of science - some people think is publication and it's really not. It's replication. There are many tests of science but I think number one is, if one scientist does something, measures something or does an experiment, can any scientist anywhere do the same experiment and get the same results? That's the real test of the scientific method. 

Well we did this kind of study, of course, here in Oklahoma. We did the first one in Pennsylvania, and then in Connecticut and then Oklahoma, 1,000 people, and in New Hampshire. 1,100 people in North Carolina, 200 in Kansas, 400 in Illinois, 2,400 in California. The results came out so eerily similar in all of these studies that, and we can now be pretty confident that they're on the button. They're accurate. It's really true. People are better off when they leave institutions. As people move out into regular homes, other researchers other than my group have gotten the same results and they've gotten them in Australia, Canada, England, France, the Republic of Georgia, New Zealand and so forth and so on. Many, many others. One of the big thrills for me is beginning to get involved in other countries because of all this. 

I wanted to mention near the end here that there are four classic arguments for people keeping people in institutions. Too low-functioning. That's degrading terminology but it's said all the time. Challenging behavior. Can't leave because hurts self and others and that would be a good reason if you couldn't help folks. Medical needs. Can't support people with the urgent medical needs. Ventilator-dependent. Can't do that in the community. Or age. Too old, lived here his whole life. Leave him alone. 

Those are the four classic reasons for keeping people in institutions. But people have left institutions all over the U.S., as you saw in that first graph, because basic support can be delivered anywhere. You don't need a big facility to take care of simple things like eating, dressing, and getting out or doing stuff. You just don't. And we know that now and we learned it largely in Oklahoma. 

And in challenging behavior, we've learned. An article was published just a few years ago that people went out of an institution and their challenging behavior decreased even though nobody set any program goals at all. There was no individualized plan and they just quit acting out because it wasn't so horrible to be there. Somebody told me a long time ago, "Well, gee, you know, if you have fewer rules you get less challenging behavior." I went, "What? That's genius!" 

(laughter)

Dr. Conroy (continues): And medical group homes have a long history, so we know that people can be supported in small homes because we did it here first. Because people like Karen Green and the Hissom class members who came out of Hissom Memorial Center and needed ventilators and constant watching. It happened here first. It was done here and films were made about it. 

And I got an email this morning from people at UNICEF in the Republic of Georgia saying, "We're being told that we can't set up small community homes for people with medical needs." So I'm calling on you and you and you to go tell these people in the Republic of Georgia, "We did it here 20 years ago, come on!" And it was done elsewhere. It's been done all over the country now. 

And age, it's a strange thing to find that even the oldest folks who moved out of our institutional settings benefited tremendously. And by way of story: a guy name Abe came out of Pennhurst at age 87. He had laid one of the cornerstones when Pennhurst was being built. And he came out at, I think it was 87, lived till 92 and he always said, "These are the happiest years of my life." So what are you going to say to that? He liked being at Pennhurst. I mean he practically ran the place. He helped build it. But when he got out, he had a kind of freedom he had no idea about. So Abe was a happy fellow when he passed away not too long ago. 

A word on... how did we make this mistake? How did we get into this mess? It's because of the thinking of economy of scale. We thought larger settings would cost less per person but the most expensive facilities, most expensive human services in human history are our public institutions for people with intellectual and developmental disabilities. They're averaging now about $235,000 across the nation per person per year. Tell that to the taxpayers. 

We did these because we thought we would save money by clustering people together. Economy of scale. You make a bigger factory, the cost per widget goes down. Economy of scale. Everybody read their economics textbooks. Samuelson or one of those textbooks. Is there such thing as diseconomy scale? Yeah it's on the next page. You had to finish the chapter. And it looks like this. 

The cost per unit of manufacturing something goes down as the factory gets bigger. So the cost per unit goes down. You become more efficient, and then as the factory get bigger. Did I say bigger? I meant smaller. Factory, factory gets bigger. Now as the factory still continues to grow you get a diseconomy of scale and the cost of producing each unit in the factory goes up. Because thereÆs too many staff and they fall over each other and becomes inefficient so forth. 

Diseconomy of scale is very real. It's all over the economic literature. It's been studied to the extent that we actually tell units now, there's a Dunbar's number. 150 people in an organization. If you get above Dunbar's number, break up the organization. Anybody wondering how big your agency is? 

(laughter) 

Dr. Conroy (continues): That was completely off the cuff, I assure you. 

(laughter) 

Dr. Conroy (continues): So what is the best size when we're thinking under ten? What's the best size? Well there's a lot of scientific literature on it, which I can guide you to and it's on my website. But in sociology the ideal size five for group functioning was pretty well pinned down in the 30s and 40s. 

In industrial psych, workgroup efficiency peaked at about four to eight depending on the task. In education, class size, we do a lot of talking about this. That's another whole presentation. But the real gains in academic achievement only appear when it's really small. The real big gains happen in tutoring size situations. It's more like when individual attention is possible. And in childcare, below five. Even in childcare groups, we try to break them up in small groups. Sometimes as big as 12 but the smaller the better. 

No Audio: ôProgress in Independent Functioning by Size of Home: 2200 People in Oklahoma, US 1990-1996 (100 point scale.ö  1-person homes gained 6.3 points; 2-person homes gained 6.7 points; 3-person homes gained 5.8 points; 4-to-5-person homes gained 4.5 points; 6-person homes gained 1.7 points; 7-to-10-person homes lost 0.4 points.

In Oklahoma, if you want to know who gets the best outcomes, in the terms of growth and adaptive behavior, self-care abilities, growth and learning, it's the people who lived in the smallest settings by themselves and the people who lived with one roommate. They made the biggest gains over a six year period, right there. They made very big gains and the people in the three person homes, less. Four to five person homes, less. Six person homes, much less. And when we went above six the gains vanished. So that's diminishing returns. As you get in the larger, small settings you lose the benefits of community more and more. 

No Audio: ôOklahoma Year 2000 Data Community Exposure Events Per Month.ö 1-person homes had 38 outings; 2-person homes had 36 outings; 3-person homes had 29 outings; 4-to-5-person homes had 32 outings; 6-person homes had 33 outings; 7-to-15-person homes had 14 outings, 16-plus=person homes had 6 outings.

In Oklahoma, in outings, just getting out, out of the house. This isn't again, it's not integration, it's not relationships, but it's just getting out. Larger homes, less getting out. It's harder. You've got eight people and you've got one van. You don't get out much. 

No Audio: ôMI: Opportunities for Choicemaking. Opportunities for Choicemaking (Self-Determination) MI 2001 Self- Determination Studies, 329 Participants.ö A bar graph indicating that bigger group homes showed less self-determination among residents.

In Michigan, a big multi-year study, 300 people in a self-determination study, the choice making, the ability for people to have individual freedom and control over their own lives. Larger settings, down, down, down. In personal interviews in California, satisfaction with home, down, down, down. And some weird jump with a small sample at nine, we don't know why. 

In a national study, the national core indicators, which are used here in Oklahoma. I know because I helped collect the data for the National Core Indicators Project which is operating in 23 states now. Loneliness goes up in larger homes. This is all about community homes. If you live with seven or more people, you're way more lonely than if you live alone. 

There was a book in the 50s called "The Lonely Crowd." There's something about living with people you can choose to live with. It has something important going on. In the national data - again this is the national core indicators - do you like your home? The larger the home the less they like it. In choice and self-determination, the larger the home the less the choice. It's very, very consistent. 

And I'm convinced that this is all very accurate because like I said I've got a PhD out of it, so. I wanted to say about the reason. Back in 1927, a sociologist named Kohler studied tug of war and he found something really neat. If you add... up to size 12 in some of his studies, if you add a player, the player adds a full person's strength to the game. He measured how hard people were pulling. 

If you had more than 12 players an extra person only added 70% of a person's strength. Everybody began to slack off the bigger the group got. This is the tug of war phenomenon from 1927 and each person pulled 10% less energetically above a certain size. And in human relations, the size, particularly for residential settings, it seems the size, this tipping point is rather small. It's maybe somewhere around the average size of a family in that neighborhood. So itÆs really quite small. You're trying to produce something family-like. 

We also call this the "Free Ride Phenomenon," which is, by the way, the same thing is the motivation for the mandate in the healthcare law. The new healthcare law wants everybody to sign up, otherwise people would get a free ride. That was originally a conservative idea and it was passed in Massachusetts and now in Massachusetts 98% of people signed up. So nobody's taking a free ride. Costs, the economy of scale idea, the efficiency idea. 

I'm going to skip through because just about out of time. The larger settings get more costly. The outcomes don't improve. What we seem to get is when you've got a problem in a facility, you add staff. And the bigger it gets, the more staff. The staff - there've been time and emotional studies - the staff tend to talk to each other more and more. So I have a softball theory of residential living. If you have enough staff to form a softball team, you're dead because that's what they're going to do. 

(laughter) 

Dr. Conroy (continues): We've actually measured decreased interaction with the people who live in a facility after adding more staff. So there is a diseconomy of scale when you get too big. What about money?

No Audio: ôWhat About Money?ö Spreat, S., Conroy, J., & Fullerton, A. (2004). A Cost-Benefit Analysis of Community and Institutional Placements For Persons with Mental Retardation in Oklahoma. Research in Developmental Disabilities, 26, 1 pp. 17-31. 

Well Spreat and I and Fullerton published an article from data right here in Oklahoma about Medicaid expenditures. And we found that community and institutional placements were wildly different in costs. And that's been replicated in Connecticut by size of home. We found that you'd think that smaller homes are going to be wildly expensive. They weren't in Connecticut. Larger homes tended to go up in costs. 

In Pennsylvania 1992, we found the same thing. The theory of economy of scale just doesn't work in human affairs. And there's another belief that the people with the most severe disabilities will cost a whole lot more than others. In old terms, that was "profoundly mentally retarded" and they didn't cost much more than people labeled "moderate" although there was a drop in "mild." 

Anyway, level of disability doesn't predict cost very well either. So the human economy of scale summary is that younger people have more need for individual relationships and so do people with severe disabilities. More need for individual attention. Smaller homes provide more individual attention and more individual attention leads to better development. These are simply A implies B and B implies C and so small leads to more individual attention which leads to better outcomes. And the break point seems to be somewhere around six. Above six we get bad outcomes and the best outcomes by far are in one to four and the best outcomes ever were in Oklahoma where almost nobody went above three. 

They were all ones and twos and some threes. So I believe that was the reason why Oklahoma continues to shine plus some terrific leadership around employment issues. A book to read, Small is Beautiful. My faculty couldn't believe I put this in my dissertation references, but it's by the former head of London School of Economics. It's not a joke. "Small is Beautiful: Economics as if People Mattered." 

It's a whole new view of economics and it's really worth it. So what happened here in Oklahoma, I've said all over the world now, was this good social policies. Probably the most successful American social experiment of the post war generation of all the things we did. Some things before this like social security were wildly successful and loved by Americans. 

But this one, nobody knows about it. Nobody knows what happened here in Oklahoma. But it's one of the most successful things we ever did and now it's been put into the United Nations Convention on the Rights of Persons with Disabilities. What a change. 

The whole world now with the UN convention is looking toward the U.S. because we did it first. No other country has gone as far as we did in that first graph. We've decreased institutional care. No other country has done this as much as we have. We are almost finished with institutions in this country and I've told the story of Oklahoma in the Russian Duma, in Israel, Lithuania, Mexico, Serbia, Casado. 

I'm going to Maldova, Republic of Georgia and the neatest part about the story is that this Oklahoma thing happened in the early 90s, late 80s (inaudible) ...oil went to the tubes. We didn't have any money at all. So how can you tell the Republic of Georgia, "You can get people out of institutions"? Well because it doesn't cost more. Might even cost a little less, but it won't cost more. It's a matter of spending money differently. 

That's the key and that's what Oklahoma... Sometimes it isn't about money. Sometimes it's about civil rights. And this was one time. The frontier is now smaller homes being superior quality. There is a lot of pressure after 2008 and the fiscal collapse. There's a lot of pressure to put people together in larger homes. We think we'll save money. 

I believe we're wrong. Because they will require more staff and we'll add staff and they won't get better and we'll add more staff. I believe we're wrong. We're not going to save money. But the current work to close the two remaining public institutions. We're almost there. 

It's an exciting time in Oklahoma because you'll become the 15th state that doesn't have anybody in a public institution. There are 14 now. Oklahoma will be the first big state other than Michigan that will achieve this landmark. So go for it and I know it's being done with caution. Nobody's learned more than Oklahoma about how to do it right, so I have little fear and I have great confidence that people will be better off. 

You can measure that and you can track it and of course I will always say, you know, "Oh we need more research." Look who I am. It's like Michael Moore at the Emmy's, you know, criticizing America. He's Michael Moore. But I'm going to say we need more research. We need to keep track of outcomes and cost and we have to continue to be accountable for this one final question. 

Everybody who talks about this at a cocktail party has to be able to say, I think, "Oh the people are better off." We know that. We tracked them. We visited every person every year. We surveyed every family. We really know - they're better off than they were before. That's what we're here for. And in that light I close with Winston Churchill's comment on Americans. 

This is a very popular quote overseas. "You can always count on Americans to do the right thing." Think of that in a heavy British accent. "After they've tried everything else." 

(laughter) 

Dr. Conroy (continues): Thank you so much. 

(applause)