JANUARY 20, 2004 VCU Captioning Provided By: Caption First, Inc. >> It's nice to be with you. I know that many of you, because of my weather related delays of the previous scheduled time, were able to see my previous broadcast. That is both an advantage, I think, and a disadvantage. It means I can't say the same things again. But it perhaps gives you an opportunity to spend some time with some of the things that I had to say last time. I'd like to start with an overview again, not to be too redundant from the previous broadcast, but to kind of articulate a little bit more about what it is that I think that self-determination is, and what it is I'm going to be talking about. I think it's important at a number of levels, if we don't have a sense of what it is I'm talking about, and we are trying to implement in the lives of people with disabilities, who are not going to be as effective as we would like. So this idea of enabling people to be self-governing, I think is critical to understanding what we mean when we say we want to promote this self-determination of people in vocational rehabilitation and other systems. In our work, we tried to get at what self-determination means. We have hit on, or use the idea of causal agency, as a critical feature of self-determined behavior. I want to spend a moment talking about that. I think that a number of misconceptions, many of which I went through in my previous broadcast, and which I won't go through in detail again. But we have looked at being self-determined as acting as the primary causal agent in one's life, and making choices and decisions regarding one's quality of life, free from undue external influence or interference. A causal agent is someone who makes or causes things to happen in his or her own life. I think that is an important distinction. You often hear people characterize self-determination as a, a number of ways, that include doing everything for yourself, you know, I call it the lone ranger theory of self-determination. It means you are doing everything for yourself. You are making all your own independent decisions. People usually think of that in the context of more complex decisions. So complex decisions about medical and healthcare issues, or complex decisions about, or the capacity to do complex things like balance a budget, and control one's finances completely and absolutely. I think it's important that we not misinterpret issues of self-determination, as simply meaning doing everything yourself. What I have been, come to believe, is that what being self-determined means is making things happen in your life. And for all of us, whether we have a disability or not, it's the fact that, it is a fact that we utilize a lot of different resources to achieve goals and outcomes that are preferred and that are in our best interest. What we want to be doing is not doing everything for ourselves, but using the resources that are available to us. This is equally true, I think, for people with the most, with severe disabilities, who might not be able to independently manage a budget, or make complex decisions. Nonetheless, there are a number of things that we can put into place that enable that person to have greater control in his or her life, and to make or to cause things to happen in his or her life. It can be as simple as being supported through some alternative communication system, to express a preference. It can be as simple as having multiple opportunities to try different things, so that you get a sense of what it is you prefer, versus an assumption about what you want to do. We will return to this topic later on. But I think it's really important that we understand that being self-determined doesn't mean you are doing everything independently, that it's not equated with a host of complex skills and abilities. It is my strong and firm belief that every human being can become more self-determined, and that those of us whose profession and whose mission is to support people with disabilities to achieve rich satisfying lives through employment and through other outcomes, there are things that we can do for each individual with whom we work that would enable them to be more self-determined, and to be causal agents in their life, to make or cause things to happen in their lives. So I would ask that you kind of revisit that. I will probably refer to it again, as we go through the remainder of our time together here. I want to talk specifically today about issues around self-determination, rehabilitation, and issues of workplace supports. I'll start by looking at, and very briefly over viewing what the research tells us. I would preface this by saying that we have too little research, and too little good research, about some of these things. There is a need to conduct more and better research around these topics and issues. I believe that this is an area that is both justified through research outcomes, such as those I'll talk about in an a minute, but also by ethical responsibilities as a society. People with disabilities have been clear about their desire for greater control over their lives and their destiny, about their desire to have a greater, a significant voice in decisions that impact their lives, including decisions about what kind of a job they take, and clear path. So I believe that not only is there research, what limited research exists, to justify a professional focus on this, I think ethically, as professionals, in listening to people with disabilities, that there is a more ethical justification to making a focus on self-determination. A core part of rehabilitation and workplace supports. I think you can make an argument, quite simply, that it may be the most important thing that you do in terms of supporting people. So let me go through some of the reasons. First of all, if you look at the research in transition services particularly, in research and education, in preparing young people to be adults, there is an emerging but growing database literature of support that self-determined young people, self-determined youth achieve more positive adult outcomes, including better employment related outcomes, and higher wages, than youth who are not self-determined. Our own research has looked at outcomes for youth, with cognitive disabilities, mental retardation, intellectual disabilities, learning disabilities, and in a couple studies, we probably have followed up students one year after they graduate, and three years after they graduate. In both those studies, we found clear evidence that young people who are self-determined and controlling for our factors, such as level of ability, cognitive ability, school curriculum and other things, including the number of vocational courses that a student takes, self-determination -- self-determined young people, at one year out, are twice as likely in this study, in our study, to have been employed for pay. And at that time, were earning on average, $2 an hour more than youth who were in the low self-determination group who were also employed. Three years out, we found that the employment rates had evened up a little bit for youth who were self-determined in comparison of youth who were not self-determined, but that youth who were self determined were more likely to be employed in jobs that provided healthcare, vacation, and other benefits. So we see definitely very positive employment-related outcomes, as well as three years out, we saw differences in the number of, and the percentage of youth who were living independently. The second fact, I think, is that people who are self-determined, young people who are self-determined, have a higher quality of life. We have done some research looking at the relationship between self-determination and quality of life. In that study, quality of life, or sorry, self-determination status was a higher predictor of membership in a high quality of life group than were a number of factors, including IQ score. It's clear that the educational focus on promoting and enhancing self determination has positive benefits. And that self-determined young people achieve more positive adult outcomes. In addition, there is an overwhelming, I would say, or at least compelling database that shows that people with disabilities, including people with the most severe disabilities, can learn self-management strategies, self-regulation strategies, that enable them to more independently perform vocational and employment related tasks. This is not a recent database. In fact, it's a database that really goes back to the '80s. And looking at teaching folks with severe disabilities, a strategy such as self-instruction, self-monitoring, and self-recording, self-evaluation strategies, a number of self-management strategies that have been shown to enable people with even severe disabilities to support themselves in work and employment and vocational settings, and to more independently perform work and employment related outcomes. One of the areas we have been working in recently is the application of new and emerging technology as a means for young people, adolescents, in the transition age, to support themselves using self-management types of strategies in vocational related tasks. We have conducted a couple studies that have shown that with specially designed software, that provides a self-instruction sequence, young people with cognitive disabilities can become more independent in vocational tasks that evolve -- involve a number of sequence steps, including steps up to -- up to 20 steps in a task. By more independent, what I mean is that students can perform these tasks, these vocational tasks, at a higher rate of, at a higher percentage of time doing the task correctly, and with less external prompting from a job coach or teacher or somebody else. There really is no reason that this is not the same for adults. So when we talk about enhancing the self-determination of people with disabilities in employment related outcomes, and you think about folks with more severe disabilities, particularly who you say, well, it's difficult for that person to independently make complex decisions, think about the fact that we can use some of these new emerging technologies, palm pilot, PCs and other technologies that would enable them to self-direct vocational tasks more independently. I would point to that as an example of how we can enable people to become more self-determined, even if they are not completely independent. But similarly, even in the absence of technology, it's clear that we can teach folks to do for themselves what in many cases is done for them, and thus increase and promote their self-determination. Research in rehabilitation itself suggests that VR consumers who are actively involved in their own program planning achieve more positive vocational career and development outcomes. A work by Lee Bolton and Parkerson has shown this to be the case, that active involvement in VR planning and decision-making resulted in enhanced career development outcomes for VR consumers. Similarly, there is research, Hartnett and colleagues have shown that VR consumers who are actively involved in their program planning are two times more likely to have completed rehabilitation processes and earn two to three times more than people in traditional rehabilitation process. Both of those studies speak to the fact and reinforce the research in transition that people who are actively involved in their vocational planning, in the rehabilitation and rehabilitation process are more likely to experience positive outcomes. I think that is intuitive. Most of us believe that if we are working towards goals that we have had a voice in setting, then we are going to achieve more positive outcomes. And we are going to have greater ownership over that. That's the focus of other reasons, other benefits of promoting. If you look at the research that I've just kind of briefly, obviously, overviewed, what do that relate in terms of the benefits accrued by focusing on self-determination in the context of rehabilitation and workplace supports. Folks who are self-determined are going to be better able to set goals, based on their own personal preferences, on their own interests, on their own abilities. I would contend, what that would result in is that folks who are setting a goal and identifying potential outcomes, based on personal interest and preferences, are going to be more likely to stay the course with the training needed, are going to be more likely to achieve positive outcomes in achieving those. As opposed to even a well-intentioned match for job placement, that does not adequately take into account. People who are self-determined are going to be able to solve problems that come up in their work, and their workplace support, settings, and they are going to be able to remove barriers to obtaining a preferred job, or that second or third job that is better paying or has better benefits. We know, I'm sure the people who are in the audience know that for a great many people with disabilities, it is not problems with job skills, particular employment skills, a job skills that result in job loss. It is often social and other problems that arise that result in termination. People who are better able to solve workday problems, that might involve problematic interactions with work colleagues or just problems about how to do one's tasks, those folks are going to be better able or more likely to retain their job. Also, we know, we have done some work, and others have done some work, suggesting many people with disabilities, once they end up in entry level positions, they stay there for too many years. We know those are not positions that typically have a working, a living wage associated with them, too frequently, or have benefits such as vacation and healthcare. And if you look at, we did a study with self-advocates from around the nation. These were adults with cognitive disabilities east who self-identified themselves as having a cognitive disability, who were actively involved in self-advocacy. Among this group, 80 percent of folks were employed, which if you know employment rates of people with cognitive disabilities, is very high. Of those 80 percent, when we asked if they were satisfied with their job, an overwhelming 95 to 98 percent said yes, they were satisfied with their job. If, however, we asked them whether this job that they were currently in was the job that they would like, that they would prefer to, most prefer to be in, 75 percent of the folks said no. There was another job they would prefer. When we asked what it was that was keeping them from moving into that job, almost overwhelmingly, it was that they were waiting on their job coach, or the VR system or somebody else to find that that better preferred job. People are self-determined are folks who are better able to look at what is available, to make the move from the entry level job to the second, better paying, more highly preferred job. For both job training, and for employment progression, and clear development, self-determination plays an important role. Another benefit of promoting self-determination in vocational employment relate settings is that self-determined people are a better able to advocate and more likely to advocate on their own behalf for better jobs or better working conditions. This is both a job retention issue, and a job satisfaction issue. We all know that the employment rehab systems, there are not enough resources that a job coach or someone in the system can advocate on behalf of every individual. People have to be enabled and empowered to advocate on their own behalf. In so doing, are going to be more likely to progress into better jobs, jobs that are more preferred, or are going to be able to remove problems and address problems in those settings. Secondly, there are going to be better able to identify the supports and accommodations they need to succeed. The ADA promises equal, nondiscrimination to people who are otherwise capable of performing the essential tasks of a job. And fundamentally, who can identify the supports and accommodations that they need. Again, the system, it is not the employer's responsibility, but it is the employee's responsibility to be able to identify what particular accommodations. People who are self-determined, have awareness what have they do well, what limitations are and where they need supports and who talked about these issues will be more capable and able to do that. I have I think about half an hour, or sorry, about 15 minutes. What I would like to do in that 15 minutes is to go through what I've called seven principles of promoting self-determination and rehabilitation and employment services. This is principles in the sense that, if I were to advise you in what to look at, if I were looking at promoting self-determination rehabilitation, these are the things I think that come to the forefront, based on my personal experiences with attempting to address these issues. Let me just cover those. Then my understanding is that there will be an opportunity for you to E-mail questions. If you would like to follow up with that, I will respond, and send additional information. The first principle is that we need to ensure consumer control. It remains the case that many, if not most, employment support and rehabilitation services are other directed. Decisions are by and large made by others. Even in progressive settings. We have been working with job placement issues for youth 18 to 21. Many of the people we work with are very skilled, people who are good at going out and identifying potential work sites. They have by and large worked with the adolescents, this 18 to 21-year-old, to determine what preferences they have. They work very hard at matching the available job sites to what student preferences are. But the fact of the matter is, if we start with job site development, and we go out and develop sites, and we come back and say that, here is what is available, which one do you want best, we can't be assured that that is going to be really what a student really prefers. I'll relay the story that I think illustrates that later on. We need to have active involvement of people, of the consumer of the services in the planning, the decision-making process. Indeed, in terms of job development and other issues. Now, I would point out that this doesn't mean that people with disabilities do everything themselves. As I've suggested before, being self-determined is not equivalent to doing everything for yourselves. We can actively involve in a meaningful way people in the decision-making process, and in program implementation. We can do a more effective job of identifying individual preferences, interests and strengths, and starting with those preferences and interests and strengths, to then go out and do the job development. As opposed to simply matching already identified job sites with preferences. Let me give you an illustration of that. We have worked with, as I mentioned, young people 18 to 21, transitioning. The particular case example is related to a recreation leisure outcome and not an employment outcome. But we have seen similar things occur. We have worked with these young people to self-direct, planning decision-making, goal setting process, leading to setting goals and designing programs for employment, recreation, leisure, independent living outcomes. One young man we were working with, in looking at his preferences and interests, related to the area of recreational leisure, indicated that he wanted, he was interested in becoming a storm chaser. For those of you in the great plains states, you will know that a storm-chaser are folks who are hooked to the weather channel, and frequently go out as tornadoes and other severe weather develops, and literally chases those storms to capture the moment when tornadoes emerge and hit. We knew that this young man's parents weren't going to be interested in him becoming a storm chaser. In working with him, we identified the fact that there were in fact, in this metropolitan area, there were clubs that met on a monthly basis, of people who shared this interest of storm-chasing. We worked with this man, encouraged him to contact a member of one of these clubs. Then with minimal effort, he was linked with these clubs. This club became a great support for this recreation leisure preference. I would note that it's through connections such as that, that he might find a job related to this particular preference and interest. I will assure you that had it been our responsibility to develop this program for him, none of us probably would have come up with the idea of a storm chasing as a meaningful outcome. The landscape changes dramatically, when you involve people in a meaningful way in planning and decision-making. I would just encourage you to be very systematic about determining a person's preferences. That means for people with more severe disabilities, with limited communications skills, it means doing things beyond just perhaps interviewing a family member. That is an important component. But, a lot of times, if people haven't had experiences related to particular job classes or employment options, they don't know that it's a preference. So there are a number of ways, using technology switch preferences by observation methodologies, looking at where people, how they spend their time, that we can get a better sense of preferences and interests. We need to support people, to make choices, and we need to be systematic about that. We need to provide as many options as we can, that would enable people to do that. As I've indicated, people with severe disabilities may need greater experiences with more options. They may have had very limited experiences with options in the past. And we may need to be more systematic in assessing those preferences. Again, we need to use multiple means, not just a single checklist or something else, to determine consumer job and vocational preferences. I would also emphasize that making a choice simply involves having a preference, so you have to know what you like. And then communicating that in some way. For many people with more severe disabilities, it's not that they don't know what they like, it's that they don't have a good way to communicate that. So there may be people with whom you work, who do need some focused opportunities and supports to enable them to more effectively communicate. In some cases, that may involve assistive communication or alternative or augmentative communication devices. The third principle I would advocate, we need to support people to set and attain employment goals. This is a component of actively involving people and ensuring consumer controls. Self-determined behavior is fundamentally goal-oriented behavior. We need to support people to set long and short-term goals based on their preferences, interests and abilities. There are a number of ways that we can do that systematically. At the very least, goal-setting does involve indications of preferences. And also, an important aspect of goal oriented behavior is that we track our progress toward a goal. There are many ways that we can support people to track their own progress toward an employment goal. I've referred previously to self-monitoring, self-evaluation, strategies. We have worked with people with very severe disabilities to set up self-monitoring strategies that enable them to track their progress towards employment and other related goals. It is limited only by the creativity of the people supporting this person. A fourth principle is, if you will, that we need to support people to identify and solve barriers and problems. We need to enable people to identify problems that keep them from attaining a preferred job or advancing. We need to take a look at whether that problem resolution is really a function of teaching or supporting the person to do something, versus removing barriers in the environment. I think this is an important note. And that is that, we are moving to models of defining disabilities that don't look at disability as a problem within the individual that needs to be fixed or repaired or cured or whatever else. We look at models of disability including the world health organization's classification system, to look at disability as an outcome of the relationship, the interaction between a person's abilities and limitations and the context in which that person is operating. We are often able to ensure success by focusing our attention on that context, on the workplace setting, to accommodations and through adaptations. I think this field's history, supported employment, is really, it leads the way in understanding how we can modify environments and carve, do job carving, job-sharing, the types of things we know how to do. It's important that we support people, and you learn to solve problems by solving problems. Many people with disabilities are not provided the opportunity to solve even small problems. The objective is to have them participate in problem solving and become better problem solvers. The fifth principle, we need to be active in supporting consumer self-advocacy. We need to ensure that consumers know their rights, workplace rights, but also rights within your agency and within the supports that are provided. We need to provide folks with a safe process for expressing grievances and ensuring that because they complain about their job doesn't mean they will be booted out of the agency. We need to support active, meaningful consumer representation throughout our agencies and our support mechanisms. So that people have a voice, someone they can go to that doesn't feel like that they are threatening their own job and support systems. I think as we do these things, and we also need to support individual self-advocacy skills. But I think as a focus, I'm thinking we need to ensure consumer control by ensuring that consumers have processes within our own agencies that enable them to ensure that they are getting their rights, their rights are protected and there are processes in place. This may not be a big deal most of the time. But when it is, it can be a very big deal. The 6th principle I would point out is that we need to ensure meaningful involvement in decision-making process. Decision-making is a process. It's comprised of steps. Virtually everyone can learn to participate in some portion of those, some of those steps, including identifying what options exist for employment related supports, workplace supports. What are some of the consequences of each of those options? What is the value of or importance of a particular option to us? That is a part of the decision-making process that moves beyond just an establishment of a fact, to the injection of personal preferences. There is the standing stereotype of midlife crisis for many men, to go out and buy a red sports car. But that may not be the best decision in terms of one's insurance and impact on financial stuff. They are often not the safest vehicles. There are a number of reasons, consequences. But in the end, it's all personal preferences that override that and our own values. We need to make sure that the values held by people with disabilities are taken into account in making decisions. Sometimes that means the decision may not be the most logical. These are not decisions that Spock would make necessarily. These are decisions that are made based on what the person's preferences and values are. These may be religious values. They may be cultural values. And personal values, familial values. We need to integrate these into the decisions about the course of action. We need to make sure that people have all the information they need to make truly informed decisions. That is a process that if people are actively engaged will be my view here. The final principle I will point out, we need to focus on ability and not disability. We don't need to do for people what they can do for themselves. There are a lot of ways, as you look at the folks with whom you work and you support, that you can identify ways that they can do for themselves. They can become more self-determined, to do things for themselves. It may be small. It may look like an inconsequential step. It is my belief for most people with disabilities, they will tell you it is not inconsequential. Anything you can do to help people with disabilities to be causal agents in their lives is a positive step. The more you can move towards the workplace supports, focusing on enabling people to do those and focusing on these principles, I think not only will consumers be more satisfied, they will be more successful in both job outcome, retention, advancement, career development, and that means we will be more successful. As well as, frankly, doing the right thing. I'll look forward to interacting with you via E-mail. Again, thank you for your forbearance as we tried to work out the webcast.