Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

The publication Impact began in 1988 when a small group of people working out of the basement of a University of Minnesota building met to brainstorm strategies for advancing the ideal of full inclusion of people with disabilities in all areas of community life. Those people were the early staff of the Institute on Community Integration, and among them was its founder and first director, Bob Bruininks. In this March 2014 interview, Bob talks about the community integration movement, including the Institute’s involvement, and some of the changes that have resulted in this country.

Q: In 1988, when Impact began, what was going on at the Institute and in the country in relation to people with disabilities and their families?

A: The Institute was a very new organization. We believed very strongly that the world was changing and that it should be our mission, as an organization, to really push the boundaries of innovation in advancing the ideal of full inclusion for people with disabilities in all walks of life. We took the stand early on that this was going to be our central focus, our central purpose, as an organization. We spent a lot of time developing our philosophy and a set of core values and principles to guide our work. That focus put us very much in the forefront of the whole inclusion and community integration movement that really had its origins in the early Civil Rights movement in the United States, and the Rehabilitation Amendments of the 1970s.

It was obvious that if we were going to push the envelope and be a force for change, we had to find new ways to get information out to people on a much more timely basis. We were at a university, and university faculty and staff usually spent their time writing articles, and articles usually had a period from initiation to publication of about three years. Taking three years to get ideas out was just too slow to really be of any material benefit to the people who were struggling with new laws, new regulations, new systems, and trying to create a new path to citizenship for people with disabilities. So in a brainstorming session in a downstairs conference room in Pattee Hall we came up with the idea for Impact. It would be a topical publication that would create a synthesis of best practices, even if those practices were not fully researched with impact analyses and return-on-investment studies. It would also try to create a national dialogue and, in some cases, an international dialogue on issues that we felt were important. The topics were guided in part by the interests of the staff here, but they were also guided by an assessment of the next big idea that we needed to address and bring to the consciousness of people who were struggling with the same issues in different parts of the country.

Q: How did what the Institute was doing in the 1980s connect with what parents were doing? It’s my understanding that parent advocacy on behalf of their children with disabilities was a major part of launching the community integration movement.

A: Yes, that’s very true. Actually, the parent advocacy movement in the field of disabilities started in Minneapolis to a considerable degree, with the development of the Association for Retarded Citizens in the late 1940s. Minnesota was always in the forefront, for instance pushing through new ideas on school integration – Dr. Maynard Reynolds and Dr. Evelyn Deno were instrumental in passage of the 1957 Minnesota legislation creating school programs for students with disabilities in the state, one of the first such laws in the nation. I had worked, during a two-year leave of absence from the University, as the director of the Developmental Disabilities Office for the state, and during that period we developed the community alternatives to institutions reform initiative that was really focused on taking thousands of people out of state institutions and moving them back into full citizenship in our communities. And that was on the heels of the 1972 federal Rehabilitation Amendments, which I think it is safe to say were the major civil rights act covering equal rights for people with disabilities in the early ’70s.

There was a lot of work and a lot of thinking going on about trying to serve people in new ways, and build models of services that were quite different. It was a period of time when there was an explosion of community-based opportunities for people with disabilities, and they were all basically done in separate categorical ways, which is the way publicly-funded services are delivered. We were funding health care services, education services, vocational rehabilitation, but there was very little integration of this work across these different organizational silos. Yet, if people were truly going to be citizens in their own communities, if these concepts of normalization and inclusion were going to take deep root in our society, people had to find ways to work across these boundaries and develop much more effective ways of putting in place good, sound policies and effective practices. So the Institute was focused on schools and communities, support to families, the development of housing that looked like the housing that people experience generally in our society, issues of guardianship and transportation – all of those things that were foundational to creating this path to full citizenship and engaging people with disabilities in the daily life of society.

Q: It seems like ICI was talking to a lot of different people who may not have been talking to each other.

A: That’s right. And that’s why the first issue of Impact was devoted to case management. If you take one aspect of the disability movement, for example depopulating large institutions for people with developmental disabilities, we needed laws that supported the integration of typical housing in communities rather than large congregate care facilities. That had to do with housing policies. It also depended on getting housing financing for a different kind of housing and reworking the reimbursement systems, which were focused on institutional care, and moving toward alternatives that would support more community-based, normalized housing. Then, the people living in the community, regardless of age, had to have employment opportunities or opportunities for integration into the educational systems of our state. So it made sense to focus on case management, which had everything to do with taking on a life-space and life-cycle view of a person’s development, and finding ways to integrate all the needs that people had to live fully productive lives in the community. That was also a time when people were talking about the breakdown in traditional forms of service and the need to try to integrate longer-term planning into community service and support systems. Out of that, then, came this focus for Impact of identifying what was the next most timely theme.

Q: In that first Impact there was also an announcement about a video ICI produced called “A New Way of Thinking.” It used the stories of five individuals with severe disabilities as a way to talk about new ways of thinking about community integration across the lifespan. When you look back over what’s happened with that new way of thinking in the last 25 years, are there ways you’ve seen it really taking hold?

A: The video was really the creation of Dr. Colleen Wieck, director of the Minnesota Governor’s Planning Council on Developmental Disabilities. It was her idea to help people understand the need to think about a new reality for people with developmental disabilities, and what we were trying to accomplish on behalf of people with disabilities. As I’ve said before, in that year, 1988, a lot was happening. The impact of the Education for All Handicapped Children Act of 1976 was being fully felt, and so there was a lot of emphasis on school inclusion, and inclusion in citizenship, and residential life and employment, and all other essential areas of life. I think it was her feeling that people in policy and practice needed to understand that it wasn’t just about appropriating money. People also had to think about the issues of normalization, inclusion, and full citizenship in new and transformative ways. It was an effort to build a sense of ownership in our society for a new way of thinking about services and supports and the other things that people with disabilities needed to thrive in community settings.

When the Institute conducted the first national census survey of residential living programs in the country, there were a few hundred places scattered across the nation, maybe a thousand, that were smaller living units in community settings. Subsequent surveys found thousands, and I have no idea what the number is now. That’s a major milestone – people are living in communities now in residential arrangements that look like the housing arrangements that people enjoy generally. I can walk through an apartment building in downtown Minneapolis, and there will be accommodations for people with disabilities in regular apartment houses. That was not likely the case back then, in the 1980s. Space and transportation and environment are much more accessible for people with disabilities. As a society, we made that a priority for people who have obvious, visible disabilities, across the age-span. Now, all of us, especially those of us who are a little older, have had opportunities to access those same advantages. What was once a provision to help people with disabilities now is being scaled to the redesign of environments for all of us, because at some point in your life, everyone has some need for help and support.

Transportation has been greatly expanded, mostly in urban settings, but also beyond. In employment opportunities and the development of employment in regular jobs there’s been improvement. I went to the Minnesota Orchestra concert in Orchestra Hall recently, and I was greeted by a person who obviously was a person with a disability and who was welcoming everyone to the concert.

As a university professor, and then as President of the University of Minnesota, I saw a tremendous expansion of opportunities in higher education and in the transition from high school to higher education. The University of Minnesota, for example, has one of the finest disability support systems for students. I used to run into parents of students who would tell me that their son or daughter attended the University of Minnesota, and succeeded in graduating, largely because of the support systems that were in place.

All of those are examples of how things have changed. Income support programs, housing, guardianship, citizenship, laws and regulations, transportation, employment – all of those areas of life that people normally access as part of their daily lives are now increasingly available to people, regardless of what their challenges might be at the moment. That was the vision and message of the video, “A New Way of Thinking.”

Q: There has also been a major shift in the last 25 years in terms of who’s at the table in setting policy and practice. With the growth of the self-advocacy movement, people with disabilities are helping to shape the services, supports, and policies.

A: Yes, that’s a huge change. We can trace the origins of this movement back several decades. The initial focus was on parents and caregivers who had responsibility for people, mostly children, with disabilities. Then, over time, the self-advocacy movement took root, and it is flourishing today in many different ways. When I was an officer of what is now called the American Association on Intellectual and Developmental Disabilities I was responsible for the annual program, and we built a really strong theme of self-advocacy into the program. I invited leaders of the self-advocacy movement to the national convention and they participated actively in presentations and discussions. That was an innovation in the annual program. That change, too, has been a big part of what we’ve witnessed in the last few years. That’s part of the essence of being fully integrated into the citizenship that all people ought to enjoy in our society. People ought to be able to speak for themselves and their own needs. No one ever gets everything they want, but at least you ought to be actively engaged in advocacy for yourself and others.

All of the things we’re talking about have been about exploding opportunities, and about creating a much broader range, a deeper range, of opportunities for people to participate in the daily life of our communities and nation. Those are the big changes that have occurred. There are still problems. We now are in a global economy that requires more and more education for many of the jobs in our economy. Redesigning jobs, redesigning environments, so that people can more fully participate in our labor force – those are big challenges. They’re complicated, to some extent, by technology, and they’re also aided by technology. Managing our way through these dilemmas puts new challenges in front of us all the time. I don’t think this is a quest that ever ends. It’s a journey that has a long time horizon to realize new ways of thinking and doing.

Q: What would you focus on if you were starting Impact today, or starting the Institute, today?

A: The conversation that we would have in the 21st century about our future and our commitment on behalf of people with special needs would start pretty much the same way as the one we initiated more than 30 years ago. That is, it would start first with the sense of a vision that had to do with creating a better future for all of us, and a deep discussion of the values, principles, and strategies that would guide us in that work. That part would be the same. The words might be different, and some of the ideas might be expanded in light of recent events and our sense of the future, but that part would be the same. It’s a value-centered kind of discussion and process.

The world has obviously shifted in some important ways. When Impact was started, we were just beginning to have conversations about e-mail, and only a few people had any idea that there could be something called the World Wide Web or Internet. That was in the late ’80s. Think about what has happened, basically, in 25 years. The whole world has changed. In many ways, the advances in technologies that we’ve witnessed in the last 25 years will create whole new ways of engineering environments and creating accommodations and opportunities for people who have some need for support. That’s just one of the many changes. We obviously have the graying of America, with more older citizens with other kinds of needs than was the case 25 years ago. So there are all kinds of external issues that you have to think about.

I think some of the things that would especially attract my attention now would be some of the advances and trends in molecular-cellular biology, genetics, and the application of technology to health care, and what those trends are going to do to transform life and the opportunities and prospects for people with special needs. They will create new ways to learn, adapt, and contribute. There’s an international project now on mapping the human brain, so thinking about how technology and science are going to change the way we think about learning and development and, by doing so, create new ways to increase human potential and human possibilities. I think that would be very attractive to consider as a focus area. One of the topics could be advances in neuroscience and implications for people with special needs. It could go beyond this focus to explore the importance of early intervention on the development of human capacity, and address ways to improve on learning and learning outcomes throughout the lifespan.

The area of technology and its impact is a mysterious space for me to talk about. I get most of my best information from my young grandchildren these days. But, any time you have such transformative impact in an area, that creates enormous possibilities. The transformative impact is to create more and more power through these technologies, with less and less cost. That’s a combination that’s going to change the world for all of us. We should be thinking about what the implications of these new trends might be for people who need accommodations and special supports to fully realize their potential.

And then I would revisit some of the old themes, to be honest. We have a new health care law. It has had a shaky implementation, at least on the technological end, and one needs to start thinking about how these trends in health care and health care delivery, or trends related to income support and education, are going to play out over the next few years. So I’d revisit some of the old themes – the importance and power of early education in the development of people, regardless of whether they enter the world with special needs or challenges. Maybe I would look at supported employment today in terms of how the economy is changing in the United States and the world, how that will affect employment, and what the implications might be for thinking about work and leisure in the decades ahead. We obviously have to think more and more about lifelong learning. We used to think that graduating from high school was the gold standard in education, not too many decades ago, and then access to college for some. But in this new world, access to college will have to be expanded. It’ll have to be expanded for people with special needs, as well. What does college readiness mean in the 21st century? How will young people gain the benefits of education and lifelong learning in a world that requires that for economic participation and survival?

One of the other big challenges is determining how to create equity in opportunities for all citizens and do so in a way that our society can afford. We haven’t really talked about how we increase the productivity and creative side of what we do, but that’s some of what we’re going to have to face. Increasingly, there will be finite resources to address a complex array of issues, particularly as our population gets older. We must determine better and better ways to do our work within the confines of the resources we have available. That’s a challenge every day. So much of what we do depends on the effectiveness of people, people in the service delivery system, political leaders who guide the development of policy – and where people come together, you’re going to have uneven performance and uneven results. One of the themes I would include is that, increasingly, a deeper discussion is needed of how to assess progress, outcomes, productivity, and returns in our service delivery system.

In my view, at the tender age of 72, things are considerably better than they were some decades ago, but many of the same problems remain – finite resources, differences in the creativity and implementation of programs, and in the effectiveness of the people who are associated with them. All of that needs continual work, but I think it’s getting better. It’ll be better in the future for all of us.

Q: Do you have any other thoughts you’d like to share before we close?

A: I don’t think we’re ever going to get perfection, but as long as the journey is based on fundamentally sound values, we’ll continue to make progress. It’s been a phenomenal period of growth and development, and I feel fortunate to have been a part of it.