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

03Original 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 it is about of it is about of it is about of and it is about of and being the community but NOT a part the that many people who live in community group do live in I am hopeful that the new for and Medicaid definition of community that to support people to 1) be included in their 2) provide choice and about where and with whom they live, and 3) determine from whom they receive services, will be The very that this new definition is an that many of the services we have been are really more like institutions where people have limited to no real choice about the and decisions in their suggested in Figure and as was in employment services, the type and size of residential supports for people with IDD by the state in which a person In states, nearly who not live at home with their family lives in a more individualized in others nearly no one (Larson et al., 2014).As has time and time again, we have a way to our goal of deinstitutionalization is Their on this is is such a simple call to by in nearly years ago, the complexity of the services we have built makes it to look at the growing list of and state plan services, in Table that are designed to support people living in the community, and I see clearly it is so hard to call to We are good at We seem to have a for new services, we are or the The result is our very own of Medicaid and a maze of services for which individuals and families now service and funding to support people with IDD become or different if we plan to all individuals who have was at a meeting a few and was a of a new for individuals and purpose is to people in Although this the needed to find in this state, the is so complex and complicated that even the one I can only how overwhelming these complex to individuals and I consider myself pretty well and with to the complex maze of long-term services and but I can you that, each and every my family help from an or our case to a or out a do not often about education as being a long-term service and But it years is a long-term service in my is a place of and It is a for individuals and It the transition we all know and understand to be a that is to community living as an school is individuals and families often find with no service and too with IDD often the of the school day and their to know that when children with IDD are included in with children disabilities they have outcomes as of the over a million children with IDD in special education in the United States, than half spend over of their time included in regular education (National Center for know one of my most about how we are with to inclusion of children with disabilities in school is to my about their experiences in school and to when I am at their school the one I very good about what I from them and what I the it is clear that we have similar issues in schools with to inclusion and with disabilities are in with but they are not a part of the This reality is by their is known about the opportunities for and to their In school there were transition programs for students with IDD that served about individuals 2014). We know there are similar programs in the United States that offer opportunities to Although we know very little about the outcomes of these we know they do not to be for all who want to opportunities for I have service and support people to have lives in the community. What are our in these services, and is funding at the of their In all of money has is no different in long-term services and support systems. It is the to funding of services that, more often than of complexity and and there are for the service or support and who there are for determining what and how much a person of the there are to decisions and offer these a lot of money and the of services and supports even more in Figure the for IDD services and in the United States for was nearly half of these were for also known as the et al., time, as we have and served more people, we have certainly simultaneously has from in to in growth have from between to between et al., think it is to that the are being on the most individualized we still spend the most money person served on and care services (see Figure as I have shown a few there is variation on for IDD services and supports depending on the state in which you This variation significant in the availability and to community services and also a lot in special education services. The special education when you the state and that are the overwhelming majority of that into special education services, are to the of all on long-term services and supports of those of you involved in policy at the state or there are not to support people with disabilities. in and the development of new programs and funding what is often to as the of states and, as a and of were seen in services and supports to people with IDD was not only for people with IDD but also for the and people with types of disabilities. This has resulted in a of states at moving long-term services and supports for people with IDD into managed states have to managed care systems for at least of their for people with and have to move in that This should not be to The person served in is and the in the based on who is in the system and who is not are very I am of these in my There are individuals in our system for which we spend well over a million a for them to live in the community for to live in most people receive way to say this is that people have services and others have means of services. I think we to be paying much more to these and something about have evolved a system in which the the services and those who can navigate and the complex systems we have built and this is simply not I think managed care are the way to find this I am not complex. However, I am not surprised to see state systems of to as a because we have not them The very system we have created is has created significant and and not even close to serving who is so hard about what we all are trying so hard to people to have lives in the communities of their choice where they are and are that every person is their context is and their support are This and on the part of service and systems. 3.5 million unique individuals to serve and this is a the past 30 years we have certainly in the services are more there are opportunities for and we are certainly more on people in the community in the context of their family many people with IDD have or as and would lives in their I think we are on the of a new deinstitutionalization by the of states to offer employment opportunities in the most integrated the new that so clearly define community living, the growing of the use of and in and long-term services and supports all to the for change in how we are supporting with IDD in the United It is a time for new new and this next of We move from services and supports that are defined by attitude, and being in the community but not of the community. We move toward community living, where people are and the of their This is not to be It will It will it will and just like the deinstitutionalization But if we are truly to a long-term services and supports that supports people with IDD being participating and being in our we the way in this new we think about this next toward included we have to focus on accepting that far too many people who live in group or living programs have few opportunities to and, as so shared with us in the people with IDD are often and from the friends they want to also that far too many people with IDD are this past I had the opportunity to from a who was to of my she shared her personal about her who is now in his As she was his in the context of their the most significant her is that, since school, has had no friends. has no of his family and I this in my own My whom many of you is a who lives with has good and I think most of the time say has a good life and we would But is family has with whom and for whom but they have no relationship of has a who lives in and with whom to but my is that she has really always been a to

Intellectual and developmental disabilities, 2014 · doi:10.1352/1934-9556-52.6.475