Presidential address, 2014-embracing complexity: community inclusion, participation, and citizenship.

Abstract

A couple of years ago, Mike Wehmeyer set a new precedent by issuing the presidential address at the beginning of his term, rather than at the end. So, thank you Mike for establishing this tradition—I am sure that I will like it more in about 30 minutes—and thanks to all of you, who stayed to the end of the conference, for the opportunity to speak to you this afternoon to deliver my presidential address, Embracing Complexity: Community Inclusion, Participation, and Citizenship, and to serve your organization in a leadership role. It is such an honor to be here today among so many people that I consider esteemed colleagues and dear friends. I am certainly humbled by this opportunity and, frankly, a little intimidated to be speaking to a group of such distinguished leaders in the field of intellectual and developmental disabilities (IDD).My path to the American Association on Intellectual and Developmental Disabilities (AAIDD) was pretty simple. I was working for a provider organization and one of my colleagues came back from an AAIDD Minnesota meeting and mentioned planning the upcoming state conference. I told her that sounded interesting, and she invited me to the next meeting. I have been involved since that time and have always found AAIDD to be my professional home because of its multidisciplinary focus on IDD. My path to this organization should be a reminder to all of you that all it takes is a simple invitation and people respond and become engaged. I urge each of you to invite at least one of your colleagues or friends to join AAIDD.As a good steward of the role of incoming president of this organization and this task of putting together these thoughts, I did my homework. Thanks to Maggie Nygren's help, I was able to read presidential speeches in every decade since this organization began. I started with 1894 and ended by reading every speech that I have listened to in the 20+ years I have been a member. My purpose for this task was to understand a bit of AAIDD history and to look for trends and themes that relate to the topic of my address, Embracing Complexity: Community Inclusion, Participation, and Citizenship.I can unequivocally report to you that this organization has been wrestling with these issues since its beginning; certainly in different time periods and contexts but, at the root, very similar issues. In preparing, I also consulted with living past presidents of the association to learn from them what they perceived as the most complex issues we face in the contemporary field. Now, I have to admit, part of this exercise was to validate that I was not way off base in the complexities I thought existed and planned to include in my address. To my surprise, nearly all of the living past presidents who responded to my request had remarkably similar ideas about the complexities we face, and, luckily for me, I was not way off base.Most importantly, as I prepared, I reflected on and consulted with the people with whom I have worked and learned from throughout my career who live with disabilities. Their voices and our shared experiences will certainly be heard throughout my remarks.Lastly, I consulted with the Merriam-Webster dictionary to ensure that I had a clear understanding of the words I selected for the conference theme. I was initially a bit overwhelmed and stunned at the amount of advertising that was occurring as I was consulting the online dictionary, and I was simultaneously fascinated by how this advertising changed depending on the word I was searching for. It is truly fascinating. This complex marketing was a lesson for me in the remarkable changes that have occurred in our culture since I have been a member of this association and a lesson in the power of marketing and advertising. However, as a quick reminder, or perhaps as a mini-lesson to you, here's what Merriam-Webster had to say about the conference theme.According to Merriam-Webster, complexity is really the state of not being simple or, conversely, the state of being complex, which is something that is complicated or hard to understand. I asked myself if I really thought that what has evolved to be the community living services and support system for people with IDD in the United States is complex, complicated, and hard to understand. Without question, the answer to this is, YES, through my lens and the lenses of the people with disabilities and their families that I know.Inclusion is the act of including or to be included. However, this definition also discusses the relationship between two classes, where all members of both are included. I was surprised to discover that in the dictionary I consulted, the definition of inclusion also defines this word as the practice of students with disabilities being included in regular school classes. To me, this is evidence of how we use words in this field and how, over time, these words result in changed meanings or definitions of the original word.Participation is about being involved in and being related to a larger whole, as defined in Merriam-Webster. In the context of community living, participation is about participating in communities in ways that others do.Lastly, citizenship is about being a citizen, having membership in a community, and the quality of a person's response to that membership (as defined in Merriam-Webster). In selecting the conference theme, I knew that there needed to be a colon (because there is always a colon in such titles), but I struggled with the words that would follow the colon. In this field, we often use the words inclusion, participation, and citizenship interchangeably. We also use them collectively when referring to people with IDD having full, rich lives of their choice in the community. Separately they do have different meanings. Collectively, I think they represent an overarching and often-promised goal of quality community living.There is limited time to address all of the complexities that have evolved in this field; the issues are simply too complex. As a researcher, mentor, and family member, I often find myself responding to questions asked of me by saying things like, “it's complicated,” “the system is complex,” or “the answer is too complex for the time we have.” Even simple questions, such as where people live, where they work, and how much money we spend on services, have an incredibly complex answer. I want to share a few complexities in areas of importance to me that relate to community living, and I am hopeful that they are of interest to you as well.As you are reviewing these complexities, please contemplate with me how we should handle them moving forward: Should we should embrace them, navigate through them, or bypass them and move on to something new?Everything about services and supports to people with IDD is about community living. Community living has become a complex and evolving construct in this field. What once simply meant “not living in an institution” or “living in the community” now has different meaning and new contexts. We know more; we have learned and evolved our thinking. Community living is now viewed as people: 1) living where and with whom they choose; 2) working in real jobs of their choice and earning real wages; 3) practicing faiths of their choice; 4) being connected to an array of friends and family with whom they have deep personal and intimate relationships; 5) growing and developing personally through opportunities for education and life-long learning; 5) exploring areas of personal interest; 6) experiencing physical and emotional well-being; 7) having membership in community organizations; 8) making choices, taking risks, and determining the course of their own lives; and 9) accepting the responsibilities of citizenship (such as paying taxes and voting).The desire for community living is virtually the same for all citizens. However, the complexity of community living comes from the reality that each person lives differently in the community. We all live and participate in different contexts and we view life through a variety of cultural and linguistic lenses. Community living and participation for people with IDD is influenced by many factors: first and foremost by whom they are as a human being and by whom they define as their family and close circle of friends.It is also influenced by the availability and competence of those individuals who provide the services and supports necessary for people to participate in their communities and by the policies and service delivery systems that pay for and offer these supports. These factors of the quality of staff and the policies that drive the availability and type of funding seem to determine life in the community for far too many people with disabilities.The policies and services that have evolved over the past 30 years have resulted in a complex service maze, one that is increasingly difficult, if not impossible, for individuals and families to navigate. Table 1 provides a sampling, by no means a complete list, of terms that are used in our field. These terms often represent services or the language used within services and supports. These systems are so complex that many states have or are developing new services called “systems navigation.” These services are designed to provide skilled people, whose sole purpose is to help people navigate the complex maze we've created.The developmental disabilities system we've created is so complex that it even has its own language. How many of you provide the individuals and families you support, students you teach, or workers you employ with a list of acronyms or a list of terms with their definitions? These lists are growing, not shrinking.As we expand service types, change rules, and expand our repertoire of interventions, our unique vocabulary grows and morphs into new words. Additionally, states are moving toward what I call “Big D” systems, in which policy decisions and service development for long-term services and supports are managed in cross-sector environments for all people with all types of disabilities. This makes it necessary for people who work in the field and people who receive services to understand even more words and their nuanced meanings. I know that, in Minnesota, I have spent countless hours trying to negotiate new words or new definitions for concepts like positive behavior support and person-centered planning, so they can be embraced by and used in mental health and aging services.I sometimes wonder: Is creating new words and definitions that expand our already complicated and separate language really helpful? Does it bring us any closer to supporting people by helping them get what they really want out of life? Nonetheless, this complex language exists today (see Figure 1 for examples) and the related complex services also exist and provide services to a lot of people.One of the most significant contributors to the complexity of the service system in the United States is that we have 50 states, the District of Columbia, and five territories. We also have 3,069 counties (National Association of Counties, 2014; see Figure 2).Time and again, in studies we've done at the Research and Training Center on Community Living, University of Minnesota, the single biggest predictor of availability, access, and outcomes of services or interventions is geography. The state, county, and city in which a person lives have a significant influence on the type and quality of services they receive.We know that people with IDD want jobs; they want to earn money.We have built quite a system of support to people with disabilities who want jobs. We have transition programs in schools that focus on job training; we have vocational rehabilitation programs; we have supported employment, customized employment, individualized employment, microenterprises, and employment first. But do people with IDD have jobs? The answer to this question is that the overwhelming majority of people with IDD DO NOT have jobs. As you can see by the data in Figure 3, tremendous growth has occurred since 1990 in the number of people who receive employment and day services. In 2012, roughly 600,000 people with IDD received day or employment services funded through a state developmental disabilities (DD) agency. However, of these, only a little over 100,000 actually had jobs in integrated employment (Butterworth et al., 2014).Furthermore, as shown in Figure 4, the growth and state investment over time, related to employment and day services, continues to emphasize facility-based and nonwork services, rather than integrated employment services. There is tremendous variation in participation in integrated services based on the state in which a person lives (see Figure 5), with one state serving well over 80% of people in integrated employment and others well under 10% (Butterworth et al., 2014).There also seems to be a disconnection between what people want and what they are getting (see Figure 6). Using National Core Indicators (NCI) outcome data collected across states, you can clearly see that, of the people who say they want a real job, only 26% of them actually had a goal in their individual support plan to achieve integrated employment (Human Services Research Institute [HSRI], 2014).Lastly, even people who do work do not earn livable wages, as suggested by the mean weekly wage for people being a little over $100 in both competitive and individual supported employment (HSRI, 2014). This results in most people with IDD living in poverty. It is clear that although more people are being served over time, the overwhelming majority of people who want real jobs for which they earn real wages are not realizing this aspect of community living.What do we know about where and with whom people with IDD live? First, we know that the majority of people with IDD DO NOT receive Medicaid-funded long-term services and supports; they live at home with their families and are not necessarily even known to state DD agencies. Of the estimated 3.5 million people with IDD in the United States, ONLY about 24% of these individuals are served in state DD systems. Certainly a portion of these individuals are children who are in special education but, even excluding those children in school, well over half of the people with IDD in this country are at home with few, if any, services.Secondly, we know there are just over a million people with IDD that do receive at least one type of long-term service and support through state DD agencies (Larson, et. al. 2014). Of these people, roughly one third are getting one long-term service or support (often just case management) but are not served by the dominant Medicaid programs such as Home and Community-Based Services (HCBS). For these individuals, we do not know if they are getting state plan Medicaid services (such as Personal Care Assistance [PCA]) or if they are on a waiting list for waiver or intermediate care facility (ICF) residential services. Although waiting lists have their inherent inaccuracies, for reasons many of you understand, state DD agencies do report knowing there were over 150,000 people on waiting lists for services as of June 30, 2012 (Larson et al., 2014).As shown in Figure 9, since 2001, the majority of people that do get Medicaid-funded long-term services and supports receive those services while living at home with a family member.For people who do not live at home with families, since the mid-1960s, when well over 220,000 people with IDD lived in large state-run institutions, we have seen remarkable progress in people moving out of these institutions (see Figure 10). Since 1962, 220 institutions have closed their doors and 14 plan closures in the next few years (Larson et al., 2014). This is quite an accomplishment, and certainly something for which we should be proud. Although there is much to celebrate in these closures, our goal of deinstitutionalization has certainly not been achieved. Today, nearly 27,000 people still live in large institutions (Larson et al., 2014).Additionally, nearly a quarter of a million people with IDD live in group settings (Larson et al., 2014).Does this mean they live and participate in the community? The answer to this question is particularly complex. The word “institution” is one of those words that has changed and morphed in its meaning within this field over time. In the 1960s through the 1990s I think most in this room would have defined this word as a large, state-run facility where 50, 100, or more people lived. Today, I think many of us would agree that “institution” is not just about the size of the place and the number of people who live there. It is about attitude, it is about control, it is about lack of choice, it is about lack of respect, it is about lack of opportunity, and it is about lack of relationships and being IN the community but NOT a part OF the community.I believe that many people who live in community group homes today, do live in “institutions.” I am hopeful that the new Centers for Medicare and Medicaid Services's (CMS) definition of community that requires HCBS to support people to 1) be fully included in their communities, 2) provide choice and self-determination about where and with whom they live, and 3) determine from whom they receive services, will be enforced. The very fact that this new definition exists, is an indication that many of the services we have been calling community-based are really more like institutions where people have limited to no real choice about the big and small decisions in their lives.As suggested in Figure 12, and as was true in employment services, the type and size of residential supports for people with IDD varies tremendously by the state in which a person lives. In some states, nearly everyone who does not live at home with their family lives in a small, more individualized place; yet in others nearly no one does (Larson et al., 2014).As Self Advocates Becoming Empowered (SABE) has reminded us, time and time again, we have a long way to go before our goal of deinstitutionalization is realized. Their position on this is EXTREMELY clear:This is such a simple call to action adopted by SABE in 1995 nearly 20 years ago, yet the complexity of the services we have built makes it challenging to realize.I look at the growing list of HCBS and state plan services, identified in Table 2, that are designed to support people living in the community, and I see clearly why it is so hard to realize SABE's call to action. We are good at building complexity. We seem to have a knack for adding new services, BUT we are slow to, or hardly ever, retire the old ones. The result is our very own version of Medicaid alphabet soup and a maze of services for which individuals and families now need navigators. Clearly, service and funding mechanisms to support people with IDD must become broader or radically different if we plan to reach all individuals who have needs.I was at a meeting a few weeks ago and was given a copy of a new resource developed for individuals and families. Its purpose is to assist people in finding housing. Although this tool does richly describe the steps needed to find housing in this state, the tool is so complex and complicated that even the tool leaves one feeling overwhelmed. I can only assume how overwhelming these complex processes must feel to individuals and families. I consider myself pretty well informed and savvy with regard to the complex maze of long-term services and supports, but I can honestly tell you that, each and every year, my family needs help from an advocate or our case manager to “fix a glitch” or figure out a “work around.”We do not often talk about education as being a long-term service and support. But it is; 21 years is a long-term service in my opinion. School is a place of learning and socializing. It is a lifeline for individuals and families. It predicates the transition cliff we all know about, talk about, and understand to be a foundation that is critical to successful community living as an adult. Once school is over, individuals and families often find themselves left with no service and support. All too often, young adults with IDD often lose the structure of the school day and their connections to peers.We know that when children with IDD are included in classrooms with children without disabilities they have better outcomes as adults. Yet, of the over a million children with IDD in special education in the United States, less than half spend over 50% of their time included in regular education classrooms (National Center for Educational Statistics, 2014).I know one of my most solid litmus tests about how we are doing with regard to inclusion of children with disabilities in school is to ask my sons periodically about their experiences in school and to make observations when I am at their school activities. On the one hand, I feel very good about what I hear from them and what I observe. On the other hand, it is clear that we have similar issues in schools with regard to inclusion and participation. Children with disabilities are in classrooms with other children, but they are not a part of the classroom. This reality is understood by their peers.Less is known about the opportunities for young adults and adults to continue their educational experiences. In school year 2011–2012, there were 43 transition postsecondary programs for students with IDD that served about 800 individuals (Think College, 2014). We know there are other similar programs in the United States that offer postsecondary opportunities to additional people. Although we know very little about the outcomes of these programs, we know they do not begin to be available for all who want access to opportunities for continued education.So, I have discussed three primary service systems—work, home, and school—that support people to have full lives in the community. What are our investments in these services, and is funding at the root of their complexities? In all of life, money has strings attached. That is no different in long-term services and support systems. It is the strings attached to funding of services that, more often than not, add layers upon layers of complexity and hoops. First and foremost, there are processes for eligibility determination—who gets the service or support and who does not. Second, there are processes for determining what and how much a person gets of the service. Lastly there are processes to appeal decisions and offer due process. Managing these processes costs a lot of money and the actual provision of services and supports costs even more money.As indicated in Figure 13, the total nonschool public spending for IDD services and income maintenance in the United States for FY 2011 was nearly 57 billion dollars. Nearly half of these expenditures were for HCBS, also known as the “waiver” (Braddock et al., 2013).Over time, as we have increased options and served more people, we have certainly simultaneously increased overall spending. Overall spending has increased from $14 billion in 1977 to $57 billion in 2011, yet growth rates have slowed from 4.5% between 1977-07 to 1% between 2008-11 (Braddock et al., 2013).I think it is important to note that the largest overall investments are being made on the most individualized supports, though we still spend the most money per person served on institutional and congregate care services (see Figure 15).Again, as I have shown a few times thus far, there is wide variation on spending for IDD services and supports depending on the state in which you live. This variation creates significant disparities in the availability and access to community services and supports.We also invest a lot in special education services. The overall special education expenditures, especially when you add the state and local dollars that are the overwhelming majority of dollars that flow into special education services, are comparable to the total of all other spending on long-term services and supports discussed (U.S. Department of Education, 2011).As those of you involved in policy advocacy at the state or federal levels know, there are not endless resources available to support people with disabilities. Increases in spending and the development of new programs and funding authorities need legislative authorization. Following what is often referred to as the “Great Recession” of 2009, states faced severe budget deficits and, as a result, cuts and stagnation of expenditures were seen in services and supports to people with IDD while, simultaneously, demand was increasing not only for people with IDD but also for the elderly and people with other types of disabilities. This has resulted in a resurgence of states looking at moving long-term services and supports (LTSS) for people with IDD into managed care. Now nine states have fully moved to managed care systems for at least some of their LTSS for people with IDD, and nine have plans to move in that direction. This should not be surprising to us. The cost per person served in LTSS is extremely high, and the inequities in the expenditures based on who is in the system and who is not are very clear. I am reminded of these inequities daily in my work. There are individuals in our system for which we spend well over a million dollars a year for them to live in the community (and, for some, to live in institutions), yet most people receive nothing. Another way to say this is that some people have “Lamborghini” services and others have “no means of transportation” services. I think we need to be paying much more attention to these inequities and doing something about them.We have evolved a system in which the well-informed squeaky wheel gets the best services and those who can best navigate and fight the complex systems we have built fair better, and this is simply not fair (or equitable). Do I think managed care organizations (MCOs) are the best way to find this equity? I am not sure. It's complex. However, I am not surprised to see state systems of government turning to MCOs as a possible solution, because we have not given them sufficient alternatives. The very system we have created is costly, has created significant disparities and inequities, and does not even come close to serving everyone who needs support.What is so hard about what we all are trying so hard to do—support people to have full lives in the communities of their choice where they are included, participate, and are active citizens—is that every person is unique, their context is unique, and their support needs are unique. This requires nimbleness and flexibility on the part of service providers and systems. With 3.5 million unique individuals to serve and finite resources, this is a challenge. Over the past 30 years we have certainly moved in the right direction. Our services are more flexible, there are increased opportunities for self-direction, and we are certainly spending more resources on keeping people in the community in the context of their family home. Many, many people with IDD have vibrant, or as Ann and Rud Turnbull would say, enviable lives in their communities.But, I think we are on the cusp of a new 21st century deinstitutionalization movement. Recent actions by the Department of Justice requiring states to offer employment opportunities in the most integrated setting, the new HCBS regulations that so clearly define community living, the growing intolerance of the use of aversive and deprivation procedures in schools, and long-term services and supports all point to the need for radical change in how we are supporting citizens with IDD in the United States. It is a time for new action, new thinking, and embracing this next wave of deinstitutionalization. We must move away from services and supports that are “institutions” defined by attitude, control, and being in the community but not of the community. We must move toward true community living, where people are included, participate, and realize the full potential of their citizenship. This is not going to be easy. It will take courage. It will upset many, it will cause debate and discourse just like the 20th century deinstitutionalization movement did. But if we are truly committed to a long-term services and supports infrastructure that supports people with IDD being included, participating and being full citizens in our communities, we must lead the way in this new movement.As we think about this next push toward fully included communities, we have to focus on some difficult realities. Like accepting that far too many people who live in group homes or supportive living programs have few opportunities to make choices and, as Jenny Hatch so vividly shared with us in the opening plenary, people with IDD are often controlled and prevented from seeing the friends they want to see.We must also accept that far too many people with IDD are lonely. Just this past week, I had the opportunity to hear from a parent who was talking to some of my students; she shared her personal story about her son, who is now in his 30s. As she was sharing his experiences, in the context of their family, the most significant challenge her son faces is that, since he left high school, he has had no friends. He has no social network outside of his family and work. Painfully, I observe this in my own family. My brother-in-law, Nathan, whom many of you know, is a 40-year-old man who lives with autism. He has mostly good days and I think most of the time he'd say he has a good life and we would agree. But Nathan is lonely. Our family loves him, he has co-workers with whom he laughs and for whom he deeply cares about, but they have no relationship outside of work. He has a long-time “friend” who lives in Indiana and with whom he talks to regularly, but my observation is that she has really always been a parent figure to