View in EDS HTML Full Text PDF Full Text

Perspectives on the State of the Art (and Science) of Selected Life-Span Services

Saved in:
Bibliographic Details
Title: Perspectives on the State of the Art (and Science) of Selected Life-Span Services
Language: English
Authors: Agran, Martin, Spooner, Fr (ORCID 0000-0001-9640-9959), Brown, Fredda, Morningstar, Mary, Singer, George H. S., Wehman, Paul
Source: Research and Practice for Persons with Severe Disabilities. Jun 2018 43(2):67-81.
Availability: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
Peer Reviewed: Y
Page Count: 15
Publication Date: 2018
Document Type: Journal Articles
Reports - Descriptive
Descriptors: Lifelong Learning, Conferences (Gatherings), Conference Papers, Meetings, Severe Disabilities, Inclusion, Teaching Skills, Family Programs, Behavior Problems, Supported Employment, Voting, Educational Practices, Fidelity, Change Strategies, Barriers, Related Services (Special Education)
DOI: 10.1177/1540796918769566
ISSN: 1540-7969
Abstract: At the 2016 TASH Conference in St. Louis, a research colloquium was held that focused on the state of selected life-span services for people with severe disabilities. Topics addressed by leading experts in the field included inclusion, teaching academic skills, family support, challenging behavior, supported employment, and voting. This article summarizes the information presenters shared at the colloquium. The presenters prepared a short response with a minimum number of citations based on the material they presented, which focused on the description of the practice, extent to which practices are implemented, challenges to implementing the practice, and recommended practices. Although all contributors suggested that much progress has been made, they concurred that there is still much to do in serving people with severe disabilities and their families.
Abstractor: As Provided
Number of References: 53
Entry Date: 2018
Accession Number: EJ1180602
Database: ERIC
Full text is not displayed to guests.
FullText Links:
  – Type: pdflink
    Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwG6etgi7CULXaW4brn7TRguAAAA4zCB4AYJKoZIhvcNAQcGoIHSMIHPAgEAMIHJBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDMGXIxiSdFSYRC1JZgIBEICBm_8WrMlVH_NnajsxYcdDNhe_ItdSxgDrm2PY8QYYR7-8T9-W2sah0q9Nz2KSx6uzDDWLcAS-95OOtN6Jc8RhIgmsSCWYe_3nLSwTd-EhzkVHdwiVcm0lhD1m4RwuslHFdBiRlCFORwyNhVRrZddmFdZ7Bk53imlWiwysYLtjR0252Owl6zzicIKRTyHSzvKEUDpF7d8QehQgDi1B
Text:
  Availability: 1
  Value: <anid>AN0129873637;myx01jun.18;2018Jun01.09:09;v2.2.500</anid> <title id="AN0129873637-1">Perspectives on the State of the Art (and Science) of Selected Life-Span Services </title> <p>At the 2016 TASH Conference in St. Louis, a research colloquium was held that focused on the state of selected life-span services for people with severe disabilities. Topics addressed by leading experts in the field included inclusion, teaching academic skills, family support, challenging behavior, supported employment, and voting. This article summarizes the information presenters shared at the colloquium. The presenters prepared a short response with a minimum number of citations based on the material they presented, which focused on the description of the practice, extent to which practices are implemented, challenges to implementing the practice, and recommended practices. Although all contributors suggested that much progress has been made, they concurred that there is still much to do in serving people with severe disabilities and their families.</p> <p>life-span services; severe disabilities; state of the science</p> <p>At the 2016 TASH Conference, a research colloquium was conducted: Are We Having a Mid-Life Crisis?: State of the Art (and Science) of Life-Span Services 41 Years Later. This colloquium provided attendees with, in effect, a report card on the “state of practice” across selected services (e.g., inclusion, supported employment, family support). Topics were based on professional opinion by the key authors (Agran and Spooner), with consideration of the available presentation time allocated. The topics had been reviewed and approved by members of the TASH Research and Publications Committee. This article is based on findings shared at the colloquium. Presenters were invited to write a section about the service they discussed and six agreed to write sections. They were free to focus on any age group. The intent of the colloquium was not to be encyclopedic, but to address specified areas or issues we believe are important to our field: inclusive education, academic learning outcomes, positive behavior support, supported employment, family support, and civil rights (i.e., voting). For purposes of this article, service refers to the resources and structures used to support people with intellectual and development disabilities ([<reflink idref="bib10" id="ref1">10</reflink>] ).</p> <p>The article begins with a discussion of the status of inclusive education by Mary Morningstar. Next, Fred Spooner discusses the increased attention to teaching academic skills to students with severe disabilities. Following, George Singer discusses the need to provide high-quality, wraparound family support. Then, Fredda Brown discusses that although there is a growing body of literature about dealing with challenging behavior, there is limited research about managing the most severe challenging behavior (i.e., dangerous behavior). Next, Paul Wehman discusses that although there has been a dramatic increase in implementing supported employment services, a large number of individuals continue to be served in sheltered and segregated facilities. Last, Martin Agran discusses how relatively few adults with intellectual or developmental disabilities are registered to vote or do indeed vote.</p> <p>In essence, this article serves as a status report on the quality of and extent to which appropriate services and supports are being provided to people with severe disabilities and how positive change can be facilitated. As indicated previously, it is not intended to address all life-span services across all age groups (e.g., early education and services for elderly adults with severe disabilities are missing), but to discuss issues relating to the services selected.</p> <hd id="AN0129873637-2">Inclusive Services</hd> <p>Providing educational supports to students with disabilities in inclusive settings is not a new concept, as over time educational reform has emphasized placement in general education classrooms. Research has described the importance of classroom-wide pedagogy (i.e., co-teaching, differentiated instruction, universal design for learning) that supports effective inclusion ([<reflink idref="bib27" id="ref2">27</reflink>] ; [<reflink idref="bib32" id="ref3">32</reflink>] ). However, even after 30 years of policy directives and research promoting benefits of inclusion for students with and without disabilities, students with severe disabilities continue to most likely be placed in segregated settings for the majority of their day ([<reflink idref="bib31" id="ref4">31</reflink>] ).</p> <p>Early definitions of inclusion emphasized placement and location, with students with severe disabilities placed in neighborhood schools and classrooms. More recent extensions have occurred, now emphasizing what and how to support students in general education ([<reflink idref="bib25" id="ref5">25</reflink>] ). Researchers emphasize that students with disabilities are most likely to learn grade-level academic content when in general education classrooms ([<reflink idref="bib53" id="ref6">53</reflink>] ). Effective inclusion can only occur when general and special educators, as well as other team members, collaboratively design, implement, and evaluate outcomes of instructional supports and techniques ([<reflink idref="bib20" id="ref7">20</reflink>] ). Indeed, a defining characteristic of inclusive education is how it organizes classrooms and school resources to support all students, with equity as a central tenet ([<reflink idref="bib40" id="ref8">40</reflink>] ).</p> <hd id="AN0129873637-3">Extent to Which Service Has Been Implemented</hd> <p>Recent research has amplified attention toward students with severe disabilities accessing general education curriculum and context. Evidence of positive outcomes of such students taught in general education settings is encouraging, with academic achievement, social engagement, and improved behavioral outcomes associated with learning in general education settings ([<reflink idref="bib19" id="ref9">19</reflink>] ). Supporting students in general education classes has been shown to lead to improved outcomes such as grade-level academic achievement ([<reflink idref="bib24" id="ref10">24</reflink>] ). In fact, it is well recognized that students with severe disabilities can and do acquire academic, social, and functionally relevant skills across the range of general education settings ([<reflink idref="bib43" id="ref11">43</reflink>] ). Essential skills can be taught within general education when evidence-based instructional techniques (e.g., universal design for learning, systematic instruction, embedded instruction) are incorporated. Emerging research supports the notion that instructional practices paired with multi-tiered supports are likely to improve learning for all students ([<reflink idref="bib14" id="ref12">14</reflink>] ). Nascent research points to benefits of access to general education long after students with severe disabilities have exited school, resulting in more positive adult outcomes including integrated employment ([<reflink idref="bib13" id="ref13">13</reflink>] ).</p> <hd id="AN0129873637-4">Challenges in Implementing the Service</hd> <p>Although research over the past 30 years has demonstrated academic and social benefits, the body of evidence remains incomplete. New areas of inquiry are needed to set the stage for extending successful inclusive practices, supporting scaling up and sustainability, and expanding research of both short- and long-term outcomes. Other equally compelling issues still to be resolved include the disproportionate number of culturally and linguistically diverse students who continue to be identified and served in segregated placements.</p> <p>The “midlife crisis” occurring in inclusive education can be attributed to long-held perceptions among researchers and practitioners that students with severe disabilities continue to remain unilaterally excluded from the benefits of general education, irrespective of increased research and federal investments. Clearly, research is needed to further examine special education as specialized services provided within general education settings, rather than a specific location. In addition, continued research is needed to identify and ameliorate system-wide administrative policies and practices that continue to segregate students if the field is to advance necessary changes. For these reasons, it has been noted that research must occur across several domains of influence including system-level capacity and policy efforts, building and classroom-focused changes, and student-level interventions and development ([<reflink idref="bib32" id="ref14">32</reflink>] ). Researchers have recognized a continued need to emphasize civil rights and social justice to promote educational equity through rigorous research ([<reflink idref="bib23" id="ref15">23</reflink>] ).</p> <hd id="AN0129873637-5">Recommendations</hd> <p>As indicated previously, although emergent evidence-based practices have been developed that enhance inclusive practice, translation and dissemination of established interventions such as systematic instruction and prompting strategies are needed ([<reflink idref="bib43" id="ref16">43</reflink>] ). For secondary students, implementation of transition-focused evidence-based practices such as work-based learning is known to lead to improved integrated employment outcomes ([<reflink idref="bib13" id="ref17">13</reflink>] ). Expanding self-determination models and interventions known to promote student access to inclusive general education settings are also needed ([<reflink idref="bib53" id="ref18">53</reflink>] ).</p> <p>Addressing the next generation of research requires new and innovative approaches and necessitates system-level understandings of policies, practices, and interventions across multiple domains (e.g., administrative capacities, buildings and classrooms, students). As such, further research is also needed to understand the range, intensity, and quality of instruction implemented within differing placement settings, to ensure that only the most effective instruction is utilized. In addition, research has yet to adequately address student progress toward skills needed for postschool success such as self-determination, social communication, and college and career readiness ([<reflink idref="bib33" id="ref19">33</reflink>] ). Well-designed research is necessary that demonstrates the capacity of students with severe disabilities to learn, contribute, and develop alongside same-aged peers in general education classrooms. Equally essential is policy-level research focused on school reform incorporating systemic practices leading to school and postschool outcomes for all students.</p> <hd id="AN0129873637-6">Teaching Academic Skills</hd> <p>Teaching academic skills (e.g., reading, mathematics, science) to students with severe disabilities did not come into its own until the passage of [<reflink idref="bib34" id="ref20">34</reflink>] , as the legislative mandate from NCLB was to teach academic skills to all students including those with severe disabilities and to use evidence-based practices to impart those skills. Although the professional judgment in the late 1970s was that students with moderate to severe intellectual disability should be taught functional life skills (e.g., toileting, dressing, feeding) rather than academics, there was some limited attention given to teaching functional academic content to this population. [<reflink idref="bib43" id="ref21">43</reflink>] suggested that the extension of the standard-based reform movement, a component of NCLB, was one of the three most instructionally important advancements in the area of severe disabilities as it increased expectations and expanded opportunities for this population. As suggested by [<reflink idref="bib29" id="ref22">29</reflink>] , the acquisition of academic skills is an important factor in predicting postschool success in the areas of community living outcomes, employment, and citizenship for students with disabilities.</p> <hd id="AN0129873637-7">Extent to Which Service Has Been Implemented</hd> <p>With the focus of teaching academic skills to students with severe disabilities receiving more impetus across the course of the last two decades, literature reviews have been conducted to examine what we know as a field about teaching these skills (literacy/language arts, [<reflink idref="bib8" id="ref23">8</reflink>] ; mathematics, [<reflink idref="bib7" id="ref24">7</reflink>] ; science, [<reflink idref="bib44" id="ref25">44</reflink>] ). In summarizing this work from a limited number of investigators and using the total number of published investigations as the metric, we know about twice as much about teaching reading (119 articles), as we do teaching mathematics (65 articles), and about three times as much about teaching mathematics as we know about teaching science (17 articles) to students with severe disabilities. In addition, we know that the overarching instructional strategy known as systematic instruction (application of behavior analytic principles [stimulus control, positive reinforcement]) has not only been effective for teaching functional life skills but has predominately been used to teach academic skills.</p> <hd id="AN0129873637-8">Challenges in Implementing the Service</hd> <p>Although there is considerable support that students with severe disabilities can learn academic skills, there has been some controversy regarding this initiative ([<reflink idref="bib5" id="ref26">5</reflink>] ; [<reflink idref="bib15" id="ref27">15</reflink>] ). The resistance to an enhanced focus on teaching academic skills is based on the idea that teaching functional skills more closely aligns with an independent adult life, and the degree to which teaching grade-level content takes away valuable instructional time from teaching those life-enhancing skills. Courtade et al. countered Ayres et al.’s opposition to a focus on teaching academic skills by suggesting that students have a right to a full educational opportunity, functional skills are not necessarily a prerequisite to teaching academic skills, and a standard-based curriculum is not a replacement for a functional curriculum. In reality, both sets of skills, functional and academic, are important for successful independent community participation and an enhanced quality of life. Currently, the field is trying to sort out a balanced approach in an effort to continue to improve the overall quality of life for persons with severe disabilities.</p> <hd id="AN0129873637-9">Recommendations</hd> <p>By definition, students with severe disabilities find learning difficult. It is generally acknowledged that they will not acquire functional life and academic skills as quickly or in the same way as typical developing students. We know that haphazard or trial and error approaches are not effective with this population. Across the course of the last 15 years, there has been an increasing emphasis on documenting effective, evidence-based practices to teach these skills ([<reflink idref="bib42" id="ref28">42</reflink>] ). Evidence-based practices are procedures that use causal experimental designs, either group or single-case, in which detailed descriptions of the investigation (quality indicators) and the quantity of that evidence are verified ([<reflink idref="bib21" id="ref29">21</reflink>] ; [<reflink idref="bib22" id="ref30">22</reflink>] ).</p> <p>Based on work in validating evidence-based practices for teaching literacy/language arts, mathematics, and science to students with severe disabilities, systematic instruction has been the overarching instructional technique that has been employed. More specifically, the application of task analysis (breaking a task into discrete teachable components); time delay for teaching discrete responses and chaining procedures (i.e., forward, backward, or total task presentation) for teaching tasks that have multiple steps; the application of systematic prompting and fading procedures; giving students multiple opportunities to respond; delivering in vivo instruction (teach real-life applications, teach in real-life settings); and the use of manipulates, graphic organizers, technology-aided instruction, and explicit instruction have been documented as evidence-based practices for teaching academic tasks.</p> <p>As previously indicated, until the last decade and a half, academic skills were not thought of as realistic (or achievable) learning outcomes for students with severe disabilities. It is anticipated that research in the future will yield further insight about maximizing students’ academic competence.</p> <hd id="AN0129873637-10">Family Support</hd> <p>Over the past four decades, there have been three areas of uneven progress in supporting families in their roles as caregivers and allies of loved ones with disabilities: (a) conceptual and analytic changes in how families and family support are understood, (b) gradual though highly uneven growth across states in publicly funded support services for families, and (c) development of evidence-based practices for supporting families. Together these trends have gradually elevated the importance of families and, in turn, of family support as an arena for research, service system development, and policy formulation.</p> <p>It matters how we make sense of family support because the well-being of people with severe disabilities is inextricably intertwined with the capacities of their families to give key social provisions over the long term. An undisputed consensus around negative family outcomes has given way to a much more nuanced understanding of the extensive differences in how families respond to the challenges of raising children with disabilities. Consequently, researchers have turned their attention to identifying the moderators and mediators of family distress and positive adaptation, acknowledged to be much more common than previously thought (see [<reflink idref="bib47" id="ref31">47</reflink>] , for a review). It is now recognized that many families remain cohesive and nurturing and come to view their children with disabilities as positive contributors to their quality of life. They are able to modify family routines to create effective accommodations, establish productive relationships with services and service providers, develop new ways of thinking about disability, and master adaptive skills resulting in durable and resilient families characterized by perceptions of efficacy and optimism (e.g., [<reflink idref="bib28" id="ref32">28</reflink>] ). Recognition of positive outcomes of family caregiving leads to reconceptualizing the goals of support efforts from a sole focus on relieving misery to promoting well-being through bolstering adaptation.</p> <hd id="AN0129873637-11">Challenges in Implementing the Service</hd> <p>Caregiving stress often results from an accumulation of contextual challenges rather than from disability alone. Factors such as poverty, lack of access to medical care, marital distress, and ill health of another family member, combined with challenges arising from a child’s disability, often may lead to great family difficulties. Although severe disability occurs across all social classes, families of children with severe disabilities are nearly twice as likely to experience poverty as the general population ([<reflink idref="bib37" id="ref33">37</reflink>] ). When viewed in terms of daily hardships, families of children with severe disabilities are much more likely to be afraid of running out of food and the need to skip meals for lack of it, to go without phone service, and to be forced to move in with others ([<reflink idref="bib36" id="ref34">36</reflink>] ).</p> <p>It also is abundantly clear that although much progress has been achieved, most families receive inadequate community support and a large percentage receives none at all. Public services have not been commensurate with the need as evidenced by waiting lists for Medicaid waiver funded services of 428,151 people in 2015 ([<reflink idref="bib26" id="ref35">26</reflink>] ). The unmet need for communities to provide effective ways to bolster and sustain family caregiving is extensive and rapidly growing as the population ages. For most of the past three decades, family support spending accounted for only 3% to 4% of public funds allocated for people with developmental disabilities ([<reflink idref="bib38" id="ref36">38</reflink>] ). Public resources for families and individuals with disabilities are not equitably distributed around the United States so that to a large degree the extent to which families receive a helping hand depends on where they reside. Spending on families in 2000 ranged from US$13,614 per family in North Carolina to US$234 in Alabama. A 2011 national survey of more than 2,500 parents of individuals with intellectual disability from all 50 states found that more than 50% of families reported major problems in obtaining such basic resources as respite care, trained care providers, and funds for necessary treatments ([<reflink idref="bib4" id="ref37">4</reflink>] ). An account of the progress made over the past 40 years in family support is best characterized as in an early stage of development with some promising programs unevenly and inequitably distributed, and in sum, insufficient to the manifest need.</p> <p>One of the most important problems that families face concerns challenges posed when problem behaviors develop in individuals with severe disabilities. A consensus that has emerged in family research over the past 40 years is that children’s problem behaviors are a consistent source of statistically and clinically significant distress in families of children with severe disabilities. [<reflink idref="bib16" id="ref38">16</reflink>] compared a sample of more than 1,000 individuals with intellectual disability with a large random population sample and reported that the odds ratio for children with moderate/severe intellectual disability was 3.7 for aggressive behaviors, 2.4 for anxious and depressed symptoms, and 4.0 on total problem behaviors on a commonly used comprehensive measure. The good news with regard to this finding is that a great deal also has been learned about how to address these problems.</p> <hd id="AN0129873637-12">Recommendations</hd> <p>Considerable progress has been made in developing and evaluating interventions to support families so that many practices meet current standards for proven or promising evidence-based practices ([<reflink idref="bib47" id="ref39">47</reflink>] ). Given the importance of problem behavior as a potent family stressor, it is encouraging that behavioral parent training and, more recently, positive behavior support have been shown to be efficacious including some programs that have proven effective when delivered on a large scale. A body of research has established several promising psychoeducational interventions to help parents with stress reduction and other potent coping skills including problem solving and mindfulness ([<reflink idref="bib47" id="ref40">47</reflink>] ). In addition, several supportive interventions are promising as evidence-based practices such as peer support in which trained experienced parents assist other newer parents with instrumental and emotional support ([<reflink idref="bib30" id="ref41">30</reflink>] ). The needs of families are complex, and our review of the literature suggests that those interventions that provide combinations of social support, psychoeducational skills training to manage and reduce stress, and behavioral parent training are likely to be most effective ([<reflink idref="bib47" id="ref42">47</reflink>] ). The challenge now is to create a service system that is capable of delivering these evidence-based practices on a large scale in a multi-cultural society with rapidly changing family demographics in which traditional families are a minority. The next stage of research and development in family support needs to employ a developing science of implementation to bring evidence-based practices to scale in an equitable way throughout the United States.</p> <hd id="AN0129873637-13">Students with Severe Challenging Behavior</hd> <p>We have come a long way regarding our understanding of and effectiveness in addressing the needs of individuals with severe challenging behavior. In this discussion, severe challenging behaviors are those behaviors that can be physically harmful to the individual or others (e.g., peers, family, staff). These behaviors include physical aggression to self or others (e.g., hitting, head-butting, biting, scratching), behaviors that may cause tissue damage to self (e.g., mouthing one’s hand), or property destruction that puts others in danger. Severe challenging behaviors interfere with the student being able to gain full access to common facilities (such as a general education classroom or community activities). Furthermore, individuals who engage in such behaviors are at risk of being subjected to restrictive practices ([<reflink idref="bib48" id="ref43">48</reflink>] ), including restraint or other aversive responses. The risk of injury and even death due to the use of these responses, to both the individual and to those carrying out such interventions, has been documented ([<reflink idref="bib45" id="ref44">45</reflink>] ). Regrettably, although many evidence-based strategies have been demonstrated to be effective in reducing challenging behavior, the application of these strategies with students with the most severe challenging behavior is not known.</p> <hd id="AN0129873637-14">Extent to Which Service Has Been Implemented</hd> <p>A preliminary analysis of the research literature focusing on students with severe challenging behavior, from 1980 through 2015, for students from birth through age 21 was conducted ([<reflink idref="bib9" id="ref45">9</reflink>] ) and presented at the colloquium. Within this time frame, a total of 59 articles were found that were published in refereed journals (e.g., Journal of Applied Behavior Analysis, Behavioral Interventions).</p> <p>We found that comparatively little research has been conducted (i.e., 59 peer-reviewed studies in 35 years); however, we did see an increasing trend in the conduct of studies focusing on severe problem behaviors. Furthermore, although there was an increasing trend in numbers of studies that were conducted in integrated classroom environments, the majority of studies were conducted in segregated environments. Regarding the use of aversive interventions, nine studies (15% of the number of studies) were found; these were dispersed fairly evenly across the years. This finding was surprising as we predicted that the increase noted in the use of functional behavior assessments across time would decrease the use of aversive interventions across time. Finally, only about three-quarters of the studies included a description of the crisis management strategies employed when behaviors became dangerous. When crisis management strategies were described, the details of the strategies were often unclear or incomplete.</p> <hd id="AN0129873637-15">Challenges in Implementing the Service</hd> <p>The progress of research in the area of severe challenging behavior is indeed just that challenging. The issue of safety is one that is critical and underpins the complexity of the challenge, for both the person who exhibits the behavior and those with whom they share their environments. A particularly challenging area for professionals and caregivers who aspire to use positive behavior supports is the use and reporting of crisis management strategies (also called crisis intervention or emergency intervention).</p> <p>In our analysis of the literature ([<reflink idref="bib9" id="ref46">9</reflink>] ), severe challenging behavior was defined as those behaviors that can be physically harmful to the individual or others. If a behavior can cause physical harm, it is our responsibility to prevent harm, whether it be to the individual or to others in the environment. Crisis management strategies are often employed to accomplish this. Crisis management has been defined as use of a restrictive intervention in response to a dangerous incident and not included as a strategy within a behavior support plan ([<reflink idref="bib48" id="ref47">48</reflink>] ); that is, the intention of the restraint is not to reduce the problem behavior, but to prevent injury. This type of restraint “is used only if an individual is in immediate danger to self or others and had not been responsive to less intrusive interventions tried immediately before the restraint” ([<reflink idref="bib45" id="ref48">45</reflink>] , p. 131). There has been much controversy regarding the use of crisis management; for example, if more effective function-based antecedent strategies are used, we could prevent an escalating situation and thus prevent the need for crisis management. Theoretically, this idea is aligned with the use of positive behavior supports and our goal of avoiding any use of restraint or other restriction of the individual’s movement. On the other contrary, it is rare that even the most competently crafted strategy would immediately reduce the dangerous behavior to a zero level. Thus, the need for safety measures may be necessary in some situations, at least given our current technology.</p> <p>The need to fully understand the use of crisis management is critical in understanding the state of the science in the area of dangerous behavior and is worthy of much discussion. Many questions remain unanswered: What is the relationship between the use of crisis management strategies and the dearth of research in integrated settings? Are the strategies that are used contextually appropriate for inclusive settings? Can educational staff be trained to employ needed strategies? Are such strategies actually necessary? Are strategies being implemented with procedural fidelity?</p> <p>Our review revealed that a little more than one quarter of the articles did not mention at all what would happen when the dangerous behavior occurred. As the behaviors studied were dangerous behaviors, the research and clinical audience is left without understanding how the researchers addressed the dangerous behavior, if at all. For example, did the use of blocking the self-injury or ignoring aggressive behaviors maintain a safe condition? A complete description of this level of information should be considered as important as the description of the antecedent intervention, the schedule of reinforcement, the details of the research design, or any other component of a research article. The intention of this important omission may be for a variety of reasons—from simply overlooking this as an important variable to include, to not wanting to be judged as not being aligned with the use of positive behavior supports. Regardless of the reason, we are left with a diminished understanding of how the researchers conducted their study. The ability to generalize the results of the study to other individuals with challenging behavior, and to varying contexts, also is diminished.</p> <p>For the majority of the studies that included some description of the crisis management strategies, there were often incomplete descriptions. The use of “ignore” was the most frequently used consequence when the dangerous behavior occurred. Given the definition of severe challenging behavior used to identify the articles, it is difficult to imagine, for example, how dangerous self-injurious behaviors might be ignored. It seems as though either the behavior was not as dangerous as the description implied, the individual sustained injury, or what happened following the use of “ignoring” was omitted if the behavior became too dangerous to ignore. Time-out was used as a crisis management strategy in about 12% of the studies reviewed. Assuming time-out was used for aggressive behavior, there were no descriptions about how staff actually escorted the individual into the time-out area. Did the person in the midst of an aggressive incident walk willingly with the interventionist to the time-out area? A lack of complete descriptions of such details leaves the research audience with less than a full understanding of the evidence-base that is developing in this area. Was the intervention reported able to reduce problem behaviors without the use of physical restraint or other restrictive responses, or was it just not mentioned? Readers of the research would not be able to judge if the study participants were similar to the individuals whom they are trying to effectively support. If these details are not forthcoming, we have little chance to engage in necessary dialogue regarding the ethics, the challenges, and the complexities in reducing severe problem behaviors.</p> <hd id="AN0129873637-16">Recommendations</hd> <p>Relatively few research studies have been published that focused on individuals with severe challenging behaviors. Although the numbers of articles appear to be increasing across time, it is recommended that the depth of the reporting of these studies be improved so that the complexity of implementation, contextual conflicts, and safety of the individual and others are explicitly and fully disclosed. In the current state of our science, we cannot discern whether or how crisis management strategies are used. Without a full disclosure of all strategies used, we cannot have the important dialogue that is needed to guide our field to its next steps, or to know what our current knowledge base is. It is recommended that the manuscript review process in refereed journals requires researchers in the area of severe challenging behavior to include in their report the following variables: details on strategies used when target behaviors escalate to dangerous levels, any injuries that may have occurred during the intervention or during behavioral crisis, and staff training that was used to prepare staff to implement that strategy with procedural integrity.</p> <p>Understanding the full picture of the supports that are needed to assist individuals with severe challenging behavior will guide the field to engage in important dialogue. In analyzing the level of support that is needed, we can truly assess the status of what we know about supporting these individuals and where we need to focus to learn better how to align ourselves with all that we want positive behavior supports to do.</p> <hd id="AN0129873637-17">Supported Employment</hd> <p>There was a time, almost three decades ago, that individuals with serious support needs who were labeled severely intellectually disabled, autistic, brain injured, or mentally ill never worked in competitive employment ([<reflink idref="bib11" id="ref49">11</reflink>] ; [<reflink idref="bib49" id="ref50">49</reflink>] ). These disabilities were perceived by parents and professionals as a major barrier to acquiring, maintaining, and advancing in real work for real pay.</p> <p>Fortunately, in the early 1980s, a new program evolved called supported employment; specifically, a method of intervention that drew on the use of on-site employment specialists who provided training, support, and advocacy for individuals with severe disabilities while they were employed. Over the next two decades, there were a small series of studies followed by larger ones which demonstrated the power of this approach. These studies include persons with intellectual disability ([<reflink idref="bib50" id="ref51">50</reflink>] ), severe psychiatric impairments ([<reflink idref="bib6" id="ref52">6</reflink>] ), traumatic brain injury ([<reflink idref="bib17" id="ref53">17</reflink>] ), spinal cord injury ([<reflink idref="bib35" id="ref54">35</reflink>] ), and autism ([<reflink idref="bib51" id="ref55">51</reflink>] ). Data from these studies began to change the negative dialogue and negative perceptions and documented the employment competence of persons with significant learning, behavioral, and social challenges.</p> <hd id="AN0129873637-18">Extent to Which Service Has Been Implemented</hd> <p>It is important to note that by and large the target populations of supported employment interventions were those people who were among the most disenfranchised, challenged, and chronically unemployed. These were people who lived in institutions, stayed at home all day long, or participated in adult activity centers or sheltered workshops earning little or nothing.</p> <p>There has been a remarkable amount of progress and success in implementing supported employment nationally and internationally, which is primarily marked by the paradigm shift from a center-based approach to a business-based employment model. In many ways, supported employment has challenged successfully the medical model of extensive pre-employment training to, instead, a much more functional approach which utilizes customized supports designed to help the client gain and maintain employment. New generations of persons with severe disabilities and their parents have grown up with much brighter hopes, aspirations, and expectations.</p> <p>Another positive outcome has been the relatively rapid growth of supported employment from initially serving those with intellectual disability and additional populations of persons with severe disabilities. In the late 1980s, those with traumatic brain injury began to benefit from supported employment ([<reflink idref="bib52" id="ref56">52</reflink>] ), and Drake and his colleagues developed the Individual Placement System (IPS) model which was based on supported employment ([<reflink idref="bib18" id="ref57">18</reflink>] ). Persons with spinal cord injury (SCI) also have benefited from supported employment ([<reflink idref="bib35" id="ref58">35</reflink>] ), as well as those with autism ([<reflink idref="bib51" id="ref59">51</reflink>] ).</p> <p>A third outcome has been the Employment First initiatives in more than 25 states in the United States. This initiative started in the early 2000s and has been a catalyst to bring state agencies together to utilize strategies to make employment a critical first step for all persons with severe disabilities. [<reflink idref="bib12" id="ref60">12</reflink>] chronicle the work of a number of these states.</p> <p>Perhaps the most dramatic outcome triggered by supported employment has been the U.S. Department of Justice’s (DOJ) efforts to close sheltered workshops on the basis of Title I of the [<reflink idref="bib3" id="ref61">3</reflink>] . DOJ has required 20 states to provide much greater inclusion of persons with disabilities into competitive integrated employment, and specifically in states such as Rhode Island and Oregon, mandated closure of sheltered workshops.</p> <hd id="AN0129873637-19">Challenges in Implementing the Service</hd> <p>The challenges for implementation have been substantial. First, and most troubling, is that hundreds of thousands of persons with severe disabilities remain in segregated programs and it usually appears that the two overriding problems are (a) insufficiently trained employment specialists and (b) community rehabilitation programs which are not downsizing or converting to competitive integrated employment. These two challenges are huge difficulties in implementation and remain the most critical reason that hundreds of thousands of persons live at home all day or are in segregated facilities. Businesses clearly appear to be increasingly ready to accept persons with disabilities into their workforce. The reason for these inconsistencies predominantly rests with our field being unable to consistently execute the model correctly and with high levels of fidelity.</p> <p>There is no question that funding is confusing and there are different guidelines, rules, and regulations for the use of different dollars. This is not a small problem, but it is one that is potentially manageable if the right personnel were trained and motivated for change.</p> <hd id="AN0129873637-20">Recommendations</hd> <p>The challenges to implement change can be resolved with hard work and political will. We know, more than ever, how to solve these problems for enhancing competitive integrated employment. Below we present several solutions.</p> <hd id="AN0129873637-21">Seamless transition through paid employment before high school graduation</hd> <p>The research evidence has been rapidly accumulating over the past 6 years that indicate paid employment for youth with significant disabilities correlates highly with competitive employment as young adults ([<reflink idref="bib13" id="ref62">13</reflink>] ). These data come from the National Longitudinal Transition Study-2 (NLTS-2) and also from a national Gallup Poll.</p> <hd id="AN0129873637-22">Stop spending federal dollars for segregated day programs and sheltered workshops</hd> <p>The Centers for Medicare and Medicaid Services (CMS) has the authority and power to greatly encourage Medicaid waiver funds for providing competitive integrated employment supports throughout a person’s life if the need is justified. States must write applications which focus on the need for workplace supports and CMS must reinforce these applications with appropriate levels of funding.</p> <hd id="AN0129873637-23">Pay for competitive employment outcomes and lower rates for less desirable outcomes</hd> <p>For over three decades, it has been discussed and known that community providers will alter their services based on the payment they receive for those services. So, if a state agency asks the provider to take people in the community to the zoo, YMCA, state fairs, and other community living activities and pays for that, then this is what providers will do. However, if a significantly higher rate is associated with milestones to work and integrated employment outcomes, then a much higher level of providers will change their behavior. This is a critical policy change which must be made, or no changes of any large magnitude will ever occur.</p> <hd id="AN0129873637-24">Create state training institutes for supported employment and customized employment</hd> <p>None of the above recommendations will be implemented successfully if direct staff, management, and policy makers do not understand how employment support strategies can be designed, implemented, and evaluated. To this end, there needs to be a national training strategy for professional development. One approach would be to use the Association of University Centers on Disabilities (AUCD) network where each state has a university-affiliated program through the Developmental Disabilities Act. These AUCD programs could be provided funds and a charge to be a primary training resource for supported and customized employment in each state.</p> <hd id="AN0129873637-25">Voting: A Challenge to Democracy</hd> <p>TASH has always advocated for equal protection, due process, and full citizenship for all individuals. Voting represents, arguably, the most important civic right. All citizens are guaranteed the right to vote–voting, presumably, cannot be denied to anyone. Nevertheless, relatively few people with intellectual disability vote (25%-40%, [<reflink idref="bib41" id="ref63">41</reflink>] ); for individuals with severe disabilities, the number is significantly lower. Interestingly, there was relatively little mention of people with disabilities during the presidential campaign, even though they represent one in six of eligible voters. For people with severe disabilities, was their voting participation even considered? There were several disability issues mentioned at the Democratic National Convention, but no appeal to people with disabilities to get out and vote. Although voting is a constitutional right (14th Amendment; “equal protection of the laws”), registration is handled at the state level—and this in part compounds, if not creates, the problem. There is limited knowledge, if any, about how state laws are specifically affecting people with disabilities—particularly those with significant disabilities. Given the low voter turnout rate of people with disabilities, this is arguably a significant civil rights problem. Nevertheless, not a single advocacy organization (including TASH) has demonstrated any leadership about this issue. It is time for TASH, among other organizations, to show such leadership.</p> <p>Voting is predicated on the assumption that voters will make informed decisions about candidates and issues and understand the consequences of those decisions. This assumption allows citizens in democratic societies to be considered “legally competent.” However, the assumption of legal competence requires no verification of this presumed competence. All one needs to be allowed to vote is proof of citizenship and to meet the age requirement. Nevertheless, for people with intellectual disability—particularly, for those with significant disabilities—their intelligence level continues to be a variable considered when they registered to vote. On this basis, many individuals with severe disabilities are presumed to be incompetent by judges, educators, parents, or election officials and are either denied the right to vote or discouraged from voting.</p> <p>In many states, two groups of citizens may be denied the right to vote: felons and people with “intellectual and psychiatric impairments.” A total of 44 states have disenfranchisement provisions that prohibit many people with severe disabilities from voting, based on the assumption that they are considered to be legally incompetent. Also, depending on state law, many adults with intellectual disability have guardians to take care of financial and medical responsibilities, and, as a result, may lose their right to vote.</p> <p>Denying individuals the right to vote is based on the erroneous assumption that people with intellectual disability are vulnerable to the manipulations of others, and that they may only be able to vote on one issue rather than the varying issues that appear on a ballot. That said, typical voters often just vote on one issue, are uninformed about various political issues, and may be greatly influenced when voting by such factors as their emotional state, cultural variables, race, gender, employment status, and family voting habits. In effect, a double standard exists here: Apparently, typical voters are allowed to be influenced by such variables but not people with intellectual disability. Borrowing the expression of our current president, for people with intellectual disability, the system is rigged from the very beginning.</p> <hd id="AN0129873637-26">Extent to Which Service Has Been Implemented</hd> <p>There is no accurate measure of voter turnout of people with intellectual disability; however, based on the available research, the number appears to be quite low. [<reflink idref="bib1" id="ref64">1</reflink>] asked 66 direct support personnel in a sample to share their reflections about voting for people with intellectual and developmental disabilities. Most agreed that voting was important, but many indicated that clients may not have the capacity to vote. Also, they indicated that many clients do not know how to vote or that voting is their right. As many of their clients never expressed an interest in voting, they (service providers) “never considered the idea.” In a follow-up study involving a different sample of support personnel, [<reflink idref="bib2" id="ref65">2</reflink>] reported that 80% of the respondents indicated that their clients never expressed an interest in voting; 86% indicated that parents, guardians, or advocates never discussed voting at planning meetings; approximately 66% of the clients were not registered to vote; 81% of the support personnel never assisted clients to register to vote; and 79% never provided any voting instruction.</p> <hd id="AN0129873637-27">Challenges in Implementing the Service</hd> <p>Voter participation is influenced by three factors: capacity (“Are you able to/know how to vote?”), psychology (“Do you want to vote?”), and recruitment (“Did anyone ask/encourage you to vote?”; [<reflink idref="bib46" id="ref66">46</reflink>] ). It would appear that we have struck out addressing all three of these factors. The available data suggest that service agencies and programs have attended to these only on a limited basis. In all, voting appears to be a low priority of service providers and support personnel.</p> <hd id="AN0129873637-28">Recommendations</hd> <p>To facilitate change—increase voter participation—action is needed on at least two levels: research engagement and community commitment. As mentioned previously, voting has received limited attention from researchers and there is limited information about how to encourage more individuals with severe disabilities to vote. The questions that warrant further research are as follows: What voting-related preparation have clients received from either service agencies and/or school or postschool programs; how is support provided; what kind of information do election officials receive related to serving people with intellectual disabilities; to what extent is voting eligibility adjudicated; and to what extent (and how) is voting included in students’ Individual Education Program/transition program?</p> <p>As reported previously, service providers have justified not providing voting-related instruction either because clients or their parents or guardians have not requested it or because they believe their clients would not benefit from such instruction. At both the state and community levels, providers need to be informed about the seriousness of the problem and ensure that the constitutional right to vote (and knowing how to vote) is ensured, supported, and realized.</p> <p>One other point warrants consideration. Voting is valued across two dimensions: it allows voters to provide input about a candidate or policy matter, and it confirms their identity as a participating (and respected) citizen. There is no question that some people with the most extensive support needs and severe cognitive challenges may have limited understanding of and difficulty with voting. Nevertheless, the act of voting, in and of itself, is valid in its right and may serve to enhance the role of people with severe disabilities, as perceived by others, as legitimate citizens who deserve to have all their rights respected and guaranteed. How they vote is not relevant ([<reflink idref="bib39" id="ref67">39</reflink>] ) and is seemingly secondary to the fact that they do.</p> <p>It has been suggested that denial of voting rights and the failure of people with severe disabilities to vote represents the last major civil rights battle. For all of us committed to improving the quality of life for people with severe disabilities, the situation is unacceptable. We must ensure the people we support have equal rights including the right to provide input on political decisions that may affect their lives.</p> <hd id="AN0129873637-29">Closing Comments</hd> <p>In this article, we have covered some of the most pressing life-span services for persons with severe disabilities. Seemingly, if the most basic services are not in place at some fundamental level (e.g., family support, appropriate interventions to reduce challenging behavior), then other more removed areas (e.g., academics, voting) receive limited or no attention as the focus and emphasis of the research community is directed toward more vital needs. Clearly, times (and priorities) have changed as we endeavor now to provide individuals with severe disabilities full and meaningful educational, social, and community experiences. Since the inception of TASH, as an organization, we have come a long way, but we still have a long way to go to insure equity and quality of life for individuals with severe disabilities and their families.</p> <p>In the 40 some years that TASH has been in operation, significant advances have been made in the delivery of life-span services for people with severe disabilities. Based on the fact that the level of support received by this population has increased exponentially since the mid-1970s, the status reports made at the colloquium, and as reported in this article, are more than a baseline of service delivery and research. In all, we have much to celebrate and, as each of the contributors fully recognized, there is still plenty of work to do.</p> <hd id="AN0129873637-30">Declaration of Conflicting Interests</hd> <p>The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.</p> <hd id="AN0129873637-31">Funding</hd> <p>The author(s) received no financial support for the research, authorship, and/or publication of this article.</p> <hd id="AN0129873637-32">ORCID iD</hd> <p>Fred Spooner https://orcid.org/0000-0001-9640-9959</p> <hd id="AN0129873637-33">Editor in Charge:</hd> <p>Stacy K. Dymond</p> <hd id="AN0129873637-34">Author Biographies</hd> <p>Martin Agran is professor of special education at the University of Wyoming. His research interests include voting rights, self-determination, and secondary level education.</p> <p>Fred Spooner is professor of special education at the University of North Carolina at Charlotte. His research interests include providing access to the general curriculum, personnel preparation, and teaching academic skills.</p> <p>Fredda Brown is professor of special education at Queens College. Her research interests include positive behavior support and inclusive practice.</p> <p>Mary Morningstar is professor of special education at the Universirty of Kansas. Her research interests include inclusive practice and transition.</p> <p>George H. S. Singer is professor of special education at the University of California, Santa Barbara. His research interests include families and disability, and instruction of students with severe disabilities.</p> <p>Paul Wehman is professor of physical medicine and rehabilitation at Virginia Commonwealth University. His research interests include transition from school to work and supported employment.</p> <ref id="AN0129873637-35"> <title>References</title> <blist> <bibl id="bib1" idref="ref64" type="bt">1</bibl> <bibtext>Agran M., MacLean W., Kitchen K. A. (2015). “I never thought about it”: Teaching people with intellectual disability to vote. Education and Training in Autism and Developmental Disabilities, 50, 388-396. </bibtext> </blist> <blist> <bibl id="bib2" idref="ref65" type="bt">2</bibl> <bibtext>Agran M., MacLean W., Kitchen K. A. (2016). “My voice counts, too”: Voting participation among individuals with intellectual disability. Intellectual and Developmental Disabilities, 54, 285-294. doi:10.1352/1934-9556-54.4.285 </bibtext> </blist> <blist> <bibl id="bib3" idref="ref61" type="bt">3</bibl> <bibtext>Americans with Disabilities Act (ADA) of 1990, Pub. L. No. 101-336 (July26, 1990), Title 42, U.S.C. 12101 et seq.: U.S. Statutes at Large, 104-327-378. </bibtext> </blist> <blist> <bibl id="bib4" idref="ref37" type="bt">4</bibl> <bibtext>Anderson L., Larson S. A., Wuorio A. (2011). 2010 FINDS national survey: Family and individual needs for disability supports (Technical report: Part 1). Minneapolis: Research and Training Center on Community Living, University of Minnesota. </bibtext> </blist> <blist> <bibl id="bib5" idref="ref26" type="bt">5</bibl> <bibtext>Ayres K. M., Lowrey K. A., Douglas K. H., Sievers C. (2011). I can identify Saturn but I can’t brush my teeth: What happens when the curricular focus for students with severe disabilities shifts. Education and Training in Autism and Developmental Disabilities, 46, 11-21. </bibtext> </blist> <blist> <bibl id="bib6" idref="ref52" type="bt">6</bibl> <bibtext>Bond G., Drake R., Becker D. (2008). An update of randomized controlled trials of evidence-based supported employment. Psychiatric Rehabilitation Journal, 31, 280-290. </bibtext> </blist> <blist> <bibl id="bib7" idref="ref24" type="bt">7</bibl> <bibtext>Browder D. M., Spooner F., Ahlgrim-Delzell L., Harris A., Wakeman S. (2008). A meta-analysis on teaching mathematics to students with significant cognitive disabilities. Exceptional Children, 74, 407-432. doi:10.1177/00144029 </bibtext> </blist> <blist> <bibl id="bib8" idref="ref23" type="bt">8</bibl> <bibtext>Browder D. M., Wakeman S. Y., Spooner F., Ahlgrim-Delzell L., Algozzine B. (2006). Research on reading for students with significant cognitive disabilities. Exceptional Children, 72, 392-408. doi:10.1177/001440290607200401 </bibtext> </blist> <blist> <bibl id="bib9" idref="ref45" type="bt">9</bibl> <bibtext>Brown F., Aviles Y., Schwartz J. (2016, November). Students with severe challenging behavior: What we know, what we don’t yet know. In Agran M. (Chair), Are we having a mid-life crisis? State of the art (and science).of life-span services 41 years later. Colloquium conducted at the annual meeting of TASH, St. Louis, MO. </bibtext> </blist> <blist> <bibl id="bib10" idref="ref1" type="bt">10</bibl> <bibtext>Brown I., Percy M. (2017). A comprehensive guide to intellectual and developmental disabilities. Baltimore, MD: Paul H. Brookes. </bibtext> </blist> <blist> <bibl id="bib11" idref="ref49" type="bt">11</bibl> <bibtext>Brown L., Shiraga B., Ford A., VanDeventer P., Nisbet J., Loomis R., Sweet M. (1986). Teaching severely handicapped students to perform meaningful work in non-sheltered vocational environments. In Morris R., Blatt B. (Eds.), Perspectives in special education: State of the art. New York, NY: Pergamon Press. </bibtext> </blist> <blist> <bibl id="bib12" idref="ref60" type="bt">12</bibl> <bibtext>Butterworth J., Christensen J., Flippo K. (2017). Partnerships in employment: Building strong coalitions to facilitate systems change for youth and young adults. Journal of Vocational Rehabilitation, 47, 265-276. </bibtext> </blist> <blist> <bibl id="bib13" idref="ref13" type="bt">13</bibl> <bibtext>Carter E. W., Austin D., Trainor A. A. (2012). Predictors of postschool employment outcomes for young adults with severe disabilities. Journal of Disability Policy Studies, 23, 50-63. doi:10.1177/1044207311414680 </bibtext> </blist> <blist> <bibl id="bib14" idref="ref12" type="bt">14</bibl> <bibtext>Copeland S. R., Cosbey J. (2008–2009). Making progress in the general curriculum: Rethinking effective instructional practices. Research and Practice for Persons with Severe Disabilities, 33–34(4–1), 214-227. doi:10.2511/rpsd.33.4.214 </bibtext> </blist> <blist> <bibl id="bib15" idref="ref27" type="bt">15</bibl> <bibtext>Courtade G., Spooner F., Browder B., Jimenez B. (2012). Seven reasons to promote standards-based instruction for students with severe disabilities: A reply to Ayres, Lowrey, Douglas, & Sievers. Education and Training in Autism and Developmental Disabilities, 47, 3-13. </bibtext> </blist> <blist> <bibl id="bib16" idref="ref38" type="bt">16</bibl> <bibtext>Dekker M. C., Koot H. M., van der Ende J., Verhulst F. C. (2002). Emotional and behavioral problems in children and adolescents with and without intellectual disability. Journal of Child Psychology and Psychiatry, 43, 1087-1098. doi:10.1111/1469-7610.00235 </bibtext> </blist> <blist> <bibl id="bib17" idref="ref53" type="bt">17</bibl> <bibtext>Dillahunt-Aspillaga C., Pugh M. J., Cotner B. A., Silva M. A., Haskin A., Tang X., . . . Nakase-Richardson R. (2018). Employment stability in veterans and service members with traumatic brain injury: A VA traumatic brain injury model systems study. Archives of Physical Medicine and Rehabilitation, 99(Suppl. 2), S23-S32. doi:10.1016/j.apmr.2017.05.012 </bibtext> </blist> <blist> <bibl id="bib18" idref="ref57" type="bt">18</bibl> <bibtext>Drake R. E., Becker D. R., Clark R. E., Mueser K. T. (1999). Research on the individual placement and support model of supported employment. Psychiatric Quarterly, 70, 289-301. </bibtext> </blist> <blist> <bibl id="bib19" idref="ref9" type="bt">19</bibl> <bibtext>Feldman R., Carter E. W., Asmus J., Brock M. E. (2016). Presence, proximity, and peer interactions of adolescents with severe disabilities in general education classrooms. Exceptional Children, 82, 192-208. doi:10.1177/0014402915585481 </bibtext> </blist> <blist> <bibl id="bib20" idref="ref7" type="bt">20</bibl> <bibtext>Fuchs D., Fuchs L. S., Stecker P. M. (2010). The “blurring” of special education in a new continuum of general education placements and services. Exceptional Children, 76, 301-323. doi:10.1177/001440291007600304 </bibtext> </blist> <blist> <bibl id="bib21" idref="ref29" type="bt">21</bibl> <bibtext>Gersten R., Fuchs L., Compton D., Coyne M., Greenwood C., Innocenti M. S. (2005). Quality indicators for group experimental and quasi-experimental research in special education. Exceptional Children, 71, 149-164. doi:10.1177/001440290507100202 </bibtext> </blist> <blist> <bibl id="bib22" idref="ref30" type="bt">22</bibl> <bibtext>Horner R. H., Carr E. G., Halle J., McGee G., Odom S., Wolery M. (2005). The use of single-subject research to identify evidence-based practice in special education. Exceptional Children, 71, 165-180. doi:10.1177/001440290507100203 </bibtext> </blist> <blist> <bibl id="bib23" idref="ref15" type="bt">23</bibl> <bibtext>Horner R. H., Dunlap G. (2012). Future directions for TASH: Combining values and science. Research and Practice for Persons with Severe Disabilities, 37, 111-115. doi:10.2511/02749481280257362 </bibtext> </blist> <blist> <bibl id="bib24" idref="ref10" type="bt">24</bibl> <bibtext>Hunt P., McDonnell J., Crockett M. A. (2012). Reconciling an ecological curricular framework focusing on quality of life outcomes with the development and instruction of standards-based academic goals. Research and Practice for Persons with Severe Disabilities, 37, 139-152. doi:10.2511/027494812804153471 </bibtext> </blist> <blist> <bibl id="bib25" idref="ref5" type="bt">25</bibl> <bibtext>Jackson L. B., Ryndak D. L., Wehmeyer M. L. (2008–2009). The dynamic relationship between context, curriculum, and student learning: A case for inclusive education as a research-based practice. Research and Practice for Persons with Severe Disabilities, 33–34(4–1), 175-195. doi:10.2511/rpsd.33.4.175 </bibtext> </blist> <blist> <bibl id="bib26" idref="ref35" type="bt">26</bibl> <bibtext>Kaiser Family Foundation. (2015). Waiting list enrollment for Medicaid Section 1915(c) home and community-based services waiver. Retrieved from https://<ulink href="http://www.kff.org/health-reform/state-indicator/waiting-lists-for-hcbs-waivers/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D">www.kff.org/health-reform/state-indicator/waiting-lists-for-hcbs-waivers/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D</ulink></bibtext> </blist> <blist> <bibl id="bib27" idref="ref2" type="bt">27</bibl> <bibtext>Kurth J. A., Born K., Love H. (2016). Ecobehavioral characteristics of self-contained high school classrooms for students with severe cognitive disability. Research and Practice for Persons with Severe Disabilities, 41, 227-243. doi:10.1177/1540796916661492 </bibtext> </blist> <blist> <bibl id="bib28" idref="ref32" type="bt">28</bibl> <bibtext>Maul C. A., Singer G. H. S. (2009). “Just good different things” specific accommodations families make to positively adapt to their children with developmental disabilities. Topics in Early Childhood Special Education, 29, 155-170. doi:10.1177/0271121408328516 </bibtext> </blist> <blist> <bibl id="bib29" idref="ref22" type="bt">29</bibl> <bibtext>McDonnell J., Copeland S. R. (2016). Teaching academic skills. In Brown F., McDonnell J., Snell M. E. (Eds.), Instruction of students with severe disabilities (8th ed., pp. 438-473). Boston, MA: Pearson. </bibtext> </blist> <blist> <bibl id="bib30" idref="ref41" type="bt">30</bibl> <bibtext>Montgomery L. S., Singer G. H. S. (2017). Just like family: How a community parent resource center serves culturally and linguistically diverse families and promotes inclusive practices. Inclusion, 5, 306-320. doi:10.1352/2326-6988-5.4.306 </bibtext> </blist> <blist> <bibl id="bib31" idref="ref4" type="bt">31</bibl> <bibtext>Morningstar M. E., Kurth J. A., Johnson P. E. (2017). Examining national trends in educational placements for students with significant disabilities. Remedial and Special Education, 38, 3-12. doi:10.1177/0741932516678327 </bibtext> </blist> <blist> <bibl id="bib32" idref="ref3" type="bt">32</bibl> <bibtext>Morningstar M. E., Shogren K., Lee H., Born K. (2015). Preliminary lessons about supporting participation and learning in inclusive classrooms. Research and Practice for Persons with Severe Disabilities, 40, 192-210. doi:10.1177/154079691559415 </bibtext> </blist> <blist> <bibl id="bib33" idref="ref19" type="bt">33</bibl> <bibtext>Morningstar M. E., Zagona A., Uyanik H., Xie J., Mahal S. (2017). Implementing college and career readiness standards: Critical dimensions for youth with significant disabilities. Research and Practice for Persons with Severe Disabilities, 42, 187-204. doi:10.1177/1540796917711439 </bibtext> </blist> <blist> <bibl id="bib34" idref="ref20" type="bt">34</bibl> <bibtext>No Child Left Behind Act of 2001, 20 U.S.C. § 6301 et seq. (2006). </bibtext> </blist> <blist> <bibl id="bib35" idref="ref54" type="bt">35</bibl> <bibtext>Ottomanelli L., Barnett S. D., Goetz L. L. (2014). Effectiveness of supported employment for veterans with spinal cord injury: 2-year results. Archives of Physical Medicine and Rehabilitation, 95, 784-790. doi:10.1016/j.apmr.2013.11.012 </bibtext> </blist> <blist> <bibl id="bib36" idref="ref34" type="bt">36</bibl> <bibtext>Parish S. L., Rose R. A., Andrews M. E. (2009). Income poverty and material hardship among U.S. women with disabilities. Social Service Review, 83, 33-52. doi:10.1086/598755 </bibtext> </blist> <blist> <bibl id="bib37" idref="ref33" type="bt">37</bibl> <bibtext>Parish S. L., Rose R. A., Grinstein-Weiss M., Richman E. L., Andrews M. E. (2008). Material hardship in U.S. families raising children with disabilities. Exceptional Children75, 71-92. doi:10.1177/001440290807500104 </bibtext> </blist> <blist> <bibl id="bib38" idref="ref36" type="bt">38</bibl> <bibtext>Rizzolo M. C., Hemp R., Braddock D., Schindler A. (2009). Family support services for persons with intellectual and developmental disabilities: Recent national trends. Intellectual and Developmental Disabilities, 47, 152-155. doi:10.1352/1934-9556-47.2.152 </bibtext> </blist> <blist> <bibl id="bib39" idref="ref67" type="bt">39</bibl> <bibtext>Sabatino C., Hurme S. (2009). Who has the capacity to vote?Experience, 19, 23-29. </bibtext> </blist> <blist> <bibl id="bib40" idref="ref8" type="bt">40</bibl> <bibtext>Sailor W. (2017). Equity as a basis for inclusive educational systems change. Australasian Journal of Special Education, 41, 1-17. doi:10.1017/jse.2016.12 </bibtext> </blist> <blist> <bibl id="bib41" idref="ref63" type="bt">41</bibl> <bibtext>Shur L., Kruse D. (2000). What determines voter turnout: Lessons from children with disabilities. Social Science Quarterly, 81, 571-587. doi:10.1177/1065912914563548 </bibtext> </blist> <blist> <bibl id="bib42" idref="ref28" type="bt">42</bibl> <bibtext>Singer G. H. S., Agran M., Spooner F. (2017). Evidence-based and value-based practices for people with severe disabilities. Research and Practice for Persons with Severe Disabilities, 42, 62-72. doi:10.1177/1540796916684877 </bibtext> </blist> <blist> <bibl id="bib43" idref="ref11" type="bt">43</bibl> <bibtext>Spooner F., Browder D. M. (2015). Raising the bar: Significant advances and future needs for promoting learning for students with severe disabilities. Remedial and Special Education, 36, 28-32. doi:10.1177/0741932514555022 </bibtext> </blist> <blist> <bibl id="bib44" idref="ref25" type="bt">44</bibl> <bibtext>Spooner F., Knight V. F., Browder D. M., Jimenez B., DiBiase W. (2011). Evaluating evidence-based practices in teaching science content to students with severe developmental disabilities. Research and Practice for Persons with Severe Disabilities, 36, 62-75. doi:10.2511/rpsd.36.1-2.62 </bibtext> </blist> <blist> <bibl id="bib45" idref="ref44" type="bt">45</bibl> <bibtext>Tilli D. M., Spreat S. (2009). Restraint safety in a residential setting for persons with intellectual disabilities. Behavioral Interventions, 24, 127-136. doi:10.1002/bin.280 </bibtext> </blist> <blist> <bibl id="bib46" idref="ref66" type="bt">46</bibl> <bibtext>Verba S., Schlozman K., Brady H. (1995). Voice and equality: Civic voluntarism in American life. Cambridge, MA: Harvard University Press. </bibtext> </blist> <blist> <bibl id="bib47" idref="ref31" type="bt">47</bibl> <bibtext>Wang M., Singer G. H. S. (2016). Supporting families of children with developmental disabilities: Evidence-based and emerging practices. New York, NY: Oxford University Press. </bibtext> </blist> <blist> <bibl id="bib48" idref="ref43" type="bt">48</bibl> <bibtext>Webber L. S., McVilly K. R., Chan J. (2011). Restrictive interventions for people with a disability exhibiting challenging behaviors: Analysis of a population database. Journal of Applied Research in Intellectual Disabilities, 24, 495-507. doi:10.1111/j.1468-3148.2011.00635.x </bibtext> </blist> <blist> <bibl id="bib49" idref="ref50" type="bt">49</bibl> <bibtext>Wehman P. H. (1981). Competitive employment: New horizons for severely disabled individuals. Baltimore, MD: Paul H. Brookes. </bibtext> </blist> <blist> <bibl id="bib50" idref="ref51" type="bt">50</bibl> <bibtext>Wehman P. H., Chan F., Ditchman N., Kang H. J. (2014). Effect of supported employment on vocational rehabilitation outcomes of transition-age youth with intellectual and developmental disabilities: A case control study. Intellectual and Developmental Disabilities, 52, 296-310. doi:10.1352/1934-9556-52.4.296 </bibtext> </blist> <blist> <bibl id="bib51" idref="ref55" type="bt">51</bibl> <bibtext>Wehman P. H., Schall C. M., McDonough J., Graham C., Brooke V., Riehle E., Avellone L. (2016). Effects of an employer based intervention on employment outcomes for youth with significant support needs due to autism. Autism, 21, 276-290. doi:10.1177/1362361316635826 </bibtext> </blist> <blist> <bibl id="bib52" idref="ref56" type="bt">52</bibl> <bibtext>Wehman P. H., Kreutzer J. S., West M. D., Sherron P. D., Zasler N. D., Groah C. H., . . . Sale P. R. (1990). Return to work for persons with traumatic brain injury: A supported employment approach. Archives of Physical Medicine and Rehabilitation, 71, 1047-1105. </bibtext> </blist> <blist> <bibl id="bib53" idref="ref6" type="bt">53</bibl> <bibtext>Wehmeyer M. L., Lattin D., Agran M. (2001). Achieving access to the general curriculum for students with mental retardation: A curriculum decision-making model. Education and Training in Mental Retardation and Developmental Disabilities, 36, 327-342. </bibtext> </blist> </ref> <aug> <p>By Martin Agran; Fred Spooner; Fredda Brown; Mary Morningstar; George H. S. Singer and Paul Wehman</p> </aug>
Header DbId: eric
DbLabel: ERIC
An: EJ1180602
AccessLevel: 3
PubType: Academic Journal
PubTypeId: academicJournal
PreciseRelevancyScore: 0
IllustrationInfo
Items – Name: Title
  Label: Title
  Group: Ti
  Data: Perspectives on the State of the Art (and Science) of Selected Life-Span Services
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Agran%2C+Martin%22">Agran, Martin</searchLink><br /><searchLink fieldCode="AR" term="%22Spooner%2C+Fr%22">Spooner, Fr</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-9640-9959">0000-0001-9640-9959</externalLink>)<br /><searchLink fieldCode="AR" term="%22Brown%2C+Fredda%22">Brown, Fredda</searchLink><br /><searchLink fieldCode="AR" term="%22Morningstar%2C+Mary%22">Morningstar, Mary</searchLink><br /><searchLink fieldCode="AR" term="%22Singer%2C+George+H%2E+S%2E%22">Singer, George H. S.</searchLink><br /><searchLink fieldCode="AR" term="%22Wehman%2C+Paul%22">Wehman, Paul</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Research+and+Practice+for+Persons+with+Severe+Disabilities%22"><i>Research and Practice for Persons with Severe Disabilities</i></searchLink>. Jun 2018 43(2):67-81.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: http://sagepub.com
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 15
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2018
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Descriptive
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Lifelong+Learning%22">Lifelong Learning</searchLink><br /><searchLink fieldCode="DE" term="%22Conferences+%28Gatherings%29%22">Conferences (Gatherings)</searchLink><br /><searchLink fieldCode="DE" term="%22Conference+Papers%22">Conference Papers</searchLink><br /><searchLink fieldCode="DE" term="%22Meetings%22">Meetings</searchLink><br /><searchLink fieldCode="DE" term="%22Severe+Disabilities%22">Severe Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Inclusion%22">Inclusion</searchLink><br /><searchLink fieldCode="DE" term="%22Teaching+Skills%22">Teaching Skills</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Programs%22">Family Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Problems%22">Behavior Problems</searchLink><br /><searchLink fieldCode="DE" term="%22Supported+Employment%22">Supported Employment</searchLink><br /><searchLink fieldCode="DE" term="%22Voting%22">Voting</searchLink><br /><searchLink fieldCode="DE" term="%22Educational+Practices%22">Educational Practices</searchLink><br /><searchLink fieldCode="DE" term="%22Fidelity%22">Fidelity</searchLink><br /><searchLink fieldCode="DE" term="%22Change+Strategies%22">Change Strategies</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Related+Services+%28Special+Education%29%22">Related Services (Special Education)</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1177/1540796918769566
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1540-7969
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: At the 2016 TASH Conference in St. Louis, a research colloquium was held that focused on the state of selected life-span services for people with severe disabilities. Topics addressed by leading experts in the field included inclusion, teaching academic skills, family support, challenging behavior, supported employment, and voting. This article summarizes the information presenters shared at the colloquium. The presenters prepared a short response with a minimum number of citations based on the material they presented, which focused on the description of the practice, extent to which practices are implemented, challenges to implementing the practice, and recommended practices. Although all contributors suggested that much progress has been made, they concurred that there is still much to do in serving people with severe disabilities and their families.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: Ref
  Label: Number of References
  Group: RefInfo
  Data: 53
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2018
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1180602
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1180602
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1177/1540796918769566
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 15
        StartPage: 67
    Subjects:
      – SubjectFull: Lifelong Learning
        Type: general
      – SubjectFull: Conferences (Gatherings)
        Type: general
      – SubjectFull: Conference Papers
        Type: general
      – SubjectFull: Meetings
        Type: general
      – SubjectFull: Severe Disabilities
        Type: general
      – SubjectFull: Inclusion
        Type: general
      – SubjectFull: Teaching Skills
        Type: general
      – SubjectFull: Family Programs
        Type: general
      – SubjectFull: Behavior Problems
        Type: general
      – SubjectFull: Supported Employment
        Type: general
      – SubjectFull: Voting
        Type: general
      – SubjectFull: Educational Practices
        Type: general
      – SubjectFull: Fidelity
        Type: general
      – SubjectFull: Change Strategies
        Type: general
      – SubjectFull: Barriers
        Type: general
      – SubjectFull: Related Services (Special Education)
        Type: general
    Titles:
      – TitleFull: Perspectives on the State of the Art (and Science) of Selected Life-Span Services
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Agran, Martin
      – PersonEntity:
          Name:
            NameFull: Spooner, Fr
      – PersonEntity:
          Name:
            NameFull: Brown, Fredda
      – PersonEntity:
          Name:
            NameFull: Morningstar, Mary
      – PersonEntity:
          Name:
            NameFull: Singer, George H. S.
      – PersonEntity:
          Name:
            NameFull: Wehman, Paul
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 06
              Type: published
              Y: 2018
          Identifiers:
            – Type: issn-print
              Value: 1540-7969
          Numbering:
            – Type: volume
              Value: 43
            – Type: issue
              Value: 2
          Titles:
            – TitleFull: Research and Practice for Persons with Severe Disabilities
              Type: main
ResultId 1