Children with Coloboma, Heart defects, Atresia choanae, Restricted growth, Genital hypoplasia, and Ear abnormalities (CHARGE) syndrome have many sensory impairments that can cause delays in motor development impacting physical activity, health, and quality of life. However, only one limited study has investigated motor competence in children with CHARGE syndrome. The purpose of this study was to examine

People with severe disabilities have a higher prevalence of many health conditions when compared with the general population. Examples include gastrointestinal conditions, chronic allergies, epilepsy, and sleep dysregulation, among many other health concerns. Of particular interest in the treatment of challenging behavior is the comorbidity of health conditions and behavioral challenges. Evidence suggests

The purpose of this study was to investigate the effects of an augmentative and alternative communication (AAC) app with transition to literacy (T2L) software features (i.e., dynamic text and speech output upon selection of a graphic symbol within the grid display) on the acquisition of 12 personally relevant single words for individuals with severe autism spectrum disorder (ASD) who had minimal or

Although many students with severe disabilities are enrolled in general education classrooms, general educators rarely receive strong training and guidance on supporting the academic and social participation of these students. A multiple probe across participants design was used to evaluate the effectiveness of a collaborative planning and consultation framework on the academic engagement of four middle

In this article, we provide a case example of how telehealth can be used by care providers in their homes to access empirically validated procedures such as functional communication training. As shown in the case example, complex assessment and intervention procedures were implemented successfully by care providers in their homes while receiving real-time coaching by behavior analysts who were located

Culturally and linguistically diverse families face substantial barriers in the special education system and seek support from cultural brokers to help them navigate it. We used a qualitative design to study cultural brokering experiences among Latinx families of children with extensive support needs and cultural brokers. Through individual interviews with 10 Latinx families of children with extensive

This study uses data from the National Longitudinal Transition Study 2012 to examine predictors at the individual, family, and school levels associated with parental expectations toward postsecondary education among students with significant support needs, including those with autism spectrum disorder, intellectual disability, and multiple disabilities. Consistent with previous studies, chi-square

Peer mentoring programs provide an opportunity for individuals with and without intellectual and developmental disabilities (IDD) to learn, socialize, and work together in supportive and inclusive environments. In this study, we used a phenomenological research design to explore the impact of a college campus-based peer mentoring program on the experiences and perceptions of participating college peer

Replication research provides evidence to establish, refute, or support evidence-based practices. Systematic replications are also necessary to determine “what works for whom when.” The purpose of this study was to conduct a conceptual systematic replication to evaluate the effectiveness of a multicomponent treatment package on multiplicative problem solving for middle school students with extensive

This quasi-experimental study focused on 15 pairs of children with extensive support needs, matched across 12 characteristics based on their first complete Individual Education Program (IEP) in the school district. One child in each pair was included in general education for 80% or more of their day from their first IEP to the most current IEP at the time of the study. The other child in the pair was

This study examined parents’ perceptions of constraints that impact the attainment of independent walking in children with CHARGE syndrome. This syndrome is a multifaceted syndrome including a degree of vision and hearing loss at birth. The Dynamic Systems Theory (DST) was used as an ecological lens to provide insight into the complexity of issues impacting independent walking from the parents’ perceptions

The purpose of this study was to investigate the effects of Transition to Literacy (T2L) software features (i.e., dynamic text and speech output upon selection of a graphic symbol) within a grid display in an augmentative and alternative communication (AAC) app on the single-word reading skills of five individuals with severe disabilities and complex communication needs. The study implemented a single-case

Special education teacher educators face multiple systemic, institutional, and social barriers in preparing teacher candidates to provide students with significant disabilities access to the general curriculum. This qualitative interview study explores how special education teacher educators are working to navigate these barriers while employing strategies at multiple levels. The 14 special education

The system of least prompts response prompting procedure has a rich history in special education research and practice. Recently, two independent systematic reviews were conducted to determine if the system of least prompts met criteria to be classified as an evidence-based practice. Both reviews used single-case design standards developed by What Works Clearinghouse to evaluate the rigor and effects

In spring of 2019, the Research and Practice for Persons with Severe Disabilities (RPSD) Editorial Office received a manuscript titled Why Aren’t Students with Severe Disabilities Being Placed in General Education Classrooms: Examining the Relations Among Classroom Placement, Learner Outcomes, and Other Factors. The manuscript—written by Marty Agran, Lewis Jackson, Jenny Kurth, Diane Ryndak, Kristin

Peer networks are a promising intervention for increasing social interactions between students with severe disabilities and their peers. However, this approach has not been well studied with high school students who have complex communication needs and use augmentative and alternative communication (AAC). In this study, we used a multiple probe across participants design to evaluate the effectiveness

The role of parents in placement decisions is not mentioned in the foundational paper written by Agran et al. This essay explores the various ways parents are absent in the bureaucracy and in the everyday life of schools and communities. Some of the principles of the Individuals with Disabilities Education Act are thought to be at the heart of the problem, along with attitudes of ableism and a general

Friendships are central to children’s development and well-being, but children with intellectual and developmental disabilities who have complex communication needs are at risk of social isolation. This qualitative study used methods informed by grounded theory to investigate the nature of how elementary-age children without disabilities described the experience of friendship and the dynamics of friendship

Agran and colleagues have not only summarized the research on inclusive education, but they have also summed up the frustrations of many of us who have been working with families, teachers, and administrators to facilitate the inclusion of children and young adults with severe disabilities over many years. My response takes some of their most salient points even a step further, with some additional

Inclusive education for students with severe disabilities has and continues to spark intense debate. To what extent should students with severe disabilities be educated in nonsegregated environments, particularly the general education environment? For some, there is no question, but history indicates many do not agree. Agran and colleagues provide a clear, concise summation of the rationale for continued

The purpose of this article is to respond to the perspectives of Agran and colleagues concerning barriers to general education placement for students with significant support needs from an “on the ground” lens of participation in mediations and due process hearings, as well as conversations with parental inclusion advocates throughout the country. We focus on rights, wrongs, and remedies regarding

This article addresses particular aspects of the Agran et al. identified determinants related to inclusive educational practices for students with severe disabilities. More specifically, this article focuses on perceptions of competency in students with severe disabilities and the resulting placement decisions, as well as facilitating systemic change to build inclusive systems. The discussion focuses

Data reveal that insufficient progress has been made in increasing the number of students with severe disabilities who are educated in general education classes. Agran et al. asked why this is happening and discussed determinants that may be affecting placement decisions that serve to segregate students from their peers. This article is a review of the circumstances that have facilitated the movement

This article briefly responds to the following question: Why aren’t more students with severe disabilities being placed in general education classrooms? I offer five reasons why more students with severe disabilities are not included, because: (a) ableism persists, (b) schools continue to misapply the least restrictive environment provisions of the Individuals with Disabilities Education Act in placement

In this brief response to Agran et al., I provide data on the extent to which students with the most significant cognitive disabilities (i.e., those students participating in alternate assessments on alternate achievement standards) are separated educationally from their peers without disabilities. I further discuss additional factors that may be contributing to separate placements for students with

We acknowledge that some students with severe disabilities are not being taught in general education. We do not agree that inclusion in general education is inherently better, nor do we think it is always appropriate, and we provide some reasons that a full continuum of alternative placements is not only legally mandated but appropriate. We are supportive of placement in general education for children

Little progress has been made in the last 20 years toward developing and sustaining effective inclusive programs for students with severe disabilities. An article by Agran and colleagues examines factors that contribute to this lack of progress and provides some initial discussion regarding alternatives for addressing this seemingly intractable problem. This article extends the discussion by Agran

In this introduction to the special issue, we discuss the need for research about services and supports for older adults with severe disabilities and their families. We then highlight three considerations in conducting research with older adults with severe disabilities and their families. We conclude with short descriptions of each article in this special issue.

People aging with severe disabilities face many age- and disability-related challenges that are shared with a range of family members and other caregivers. Although these challenges are often exacerbated by substantial physical, cognitive, communication, health, and other impairments associated with severe disabilities, thematically, they are often similar to the challenges faced by other older persons

Little is known about how, when, or why individuals with intellectual and developmental disabilities (IDD) retire. Recognizing the changing needs of older adults with IDD is critical to support person-driven services and development of best practices in aging transitions. Using secondary analysis of the 2016 to 2017 National Core Indicators–Adult Consumer Survey (NCI-ACS) data for adults with IDD,

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention

As a long-time special educator turned teacher preparer, I frequently search for practical resources that reflect up-to-date academic rigor and best practices. Cindy Golden’s (2018) Data Collection Toolkit: Everything You Need to Organize, Manage, and Monitor Classroom Data captured my attention, as data collection is a challenge that I observe in-service and pre-service educators struggle to manage

Individuals with severe disabilities and their families can engage in person-centered and family-centered planning for aging using a life course view. Viewing aging within the context of the family and disability is essential because many people with severe disabilities depend on their families for supports in daily living, social relationships, and for activities within communities. Since eligibility-based

People with disabilities who age may have unique experiences and face different challenges than people without disabilities who acquire disabilities as they age. These unique challenges may be especially pertinent for people with severe disabilities who already face disparities in quality of life. Yet, there is little research specifically about the quality of life of older adults with severe disabilities

Placement decisions for students with severe disabilities have often been based less on the students’ unique learning needs but more on beliefs and presumptions about student learning, entrenched school district policies that restrict program delivery options, and other variables unrelated to student needs. In light of the benefits associated with inclusive practices for students with severe disabilities

Given the longer lives of individuals with disabilities and the increasing likelihood of siblings fulfilling family caregiving roles, it is critical to identify correlates of sibling caregiving. Yet, little research has examined the relation between the severity of the disability and sibling caregiving. The purpose of this study was to understand the relation between the severity of the disability

We summarize three changes in education that have direct relevance for the education of students with severe disabilities: (a) adoption of multi-tiered system of supports as a framework for intervention, (b) delivering educational reform at the “whole school” level, and (c) advances in information technology that are altering the type and utility of data available not just for policy making but for

Literacy skills are among the most consequential skills someone can learn. Literacy supports every aspect of daily life, from learning new academic knowledge to active citizenship to finding and maintaining employment, not to mention the satisfaction and pleasure that can be experienced through using literacy to participate in leisure and recreation. Recognizing the vital nature of literacy, Toews

A secondary analysis of data from the National Longitudinal Transition Study–2 (NLTS2) was conducted to examine predictors associated with improved postschool community participation of young adults with severe disabilities. Multidimensional item response theory was used to establish criterion and predictor constructs and examine predictive relationships between these constructs. Results identified

Toews and Kurth (2019) provide convincing arguments to support their call to action. Their appeal is for research addressing comprehensive literacy instruction for students with extensive support needs that is implemented in general education classrooms. To date, there are no studies addressing this need. We do have an emerging body of research evaluating the effectiveness of multi-component early

Feeding disorders exhibited by children with developmental disabilities, which include limiting food intake or refusing to consume solid foods, often result in poor health consequences. Interventions for feeding disorders vary in terms of their acceptability to children with disabilities and their families. One specific procedure, the high-probability sequence, is a nonrestrictive approach where requests

While legislation and research have promoted inclusive education and the importance of literacy instruction for students with extensive support needs, the majority of literacy instruction research continues to occur in separate self-contained special education settings. This article is a call to action to the educational research community to elicit research on literacy instruction strategies, including

This study examined material adaptations being used with students who have severe disabilities in general education elementary classrooms during language arts, social studies, and science instruction. Data sources included classroom observations, interviews, and artifacts shared by three general and special educator teams. Findings revealed themes that describe how adaptations (a) facilitate access

Instruction and support for students with intellectual disability in general education classes should be informed by research-based interventions. In this systematic review, we examined the focus and impact of interventions delivered in inclusive classes to support middle and high school students with intellectual disability. We identified 40 intervention studies involving 177 secondary students with

Fathers of children with complex disabilities can play an important role in the development and learning of their children; however, very little is known about their school involvement experiences. We conducted semi-structured interviews with 15 fathers of children with complex disabilities to learn how these fathers perceived their involvement in their children’s education and schooling. Fathers constructed

There is a dearth of research describing the small population of students who have significant cognitive disabilities and are also English learners (ELs). This study expands what is known about this population by describing EL students who participated in Dynamic Learning Maps Alternate Assessments in 16 states during the 2016-2017 year. Data sources include (a) teacher responses to a survey of student

Data analysis inherently requires problem solving, yet it is the most understudied mathematical skill for individuals with extensive support needs. The current study taught elementary students with extensive support needs (i.e., autism and intellectual disability) to solve math word problems requiring analysis of scaled pictographs through modified schema-based instruction on an iPad. Results of the

Although the importance and influence of spirituality in the lives of youth and young adults have garnered much attention, few studies have focused on the religious and spiritual lives of young people with intellectual and developmental disabilities (IDD). We examined the congregational activities, spiritual practices, and strength of religious faith of 440 individuals with IDD (aged 13-21 years) as

Special education consists of specially designed services available for students with disabilities, and should be available across placements. Students with the most significant disabilities continue to be taught in restrictive settings, despite accumulating evidence suggesting their special education services can be delivered effectively in general education settings. Every individualized education

Families raising young children diagnosed with multiple disabilities encounter experiences that are often unique and extend well beyond the early childhood years due to the intensity and severity of their child’s needs. The contexts of these families must be understood to provide meaningful services and supports, particularly during the child’s transition from early intervention to preschool services

Although a great deal has been written about the complexities of engagement in learning, this is less true for students with severe intellectual disability. The concept of engagement of these students remains strictly behavioral. Engagement as a complex construct, consisting of behavioral, cognitive, and emotional components, must be addressed as conversations continue to grow around instructional

Children’s skill level in using a spoon facilitates increased independence during mealtimes and greater control over the pace and quantity of food intake, which has important implications for health and self-determination. Children with severe multiple disabilities, including cognitive and visual impairment (VI), require intensive instruction to achieve independence using a spoon. We used graduated

With the increase of individuals with autism spectrum disorder (ASD) leaving the public school systems with centralized training environments, there needs to be innovation in supporting staff who will find themselves working in various community environments with adolescent or adult learners. Staff training and ongoing supervision is important for enhancing student skill acquisition and long-term maintenance

Since the introduction of supported employment in the Developmental Disabilities Act of 1984 and the Rehabilitation Act Amendments of 1986, there has been continued development and refinement of best practices in employment services and supports. Progress includes creative outcomes for individuals with significant support needs including customized jobs and self-employment, community rehabilitation

Policymakers, researchers, and state vocational rehabilitation administrators share an interest in the long-term outcomes of individuals participating in the public state vocational rehabilitation program. Yet, there is limited research in the area of job retention or the service delivery practices used to support individuals with disabilities to achieve long-term success in competitive integrated

People with intellectual and developmental disabilities (IDD) continue to experience high rates of unemployment. Previous research suggests that including an employment goal in an individual’s service plan can be a mechanism toward attaining employment, especially in a community setting. This study contributes to the understanding of the role of employment goals and employment in community and facility-based

To explore the accessibility of school-wide positive behavioral interventions and supports (SWPBIS) for students with severe disabilities, we conducted a survey of 179 schools implementing SWPBIS during the 2015-2016 school year. Personnel from each school reported the frequency and level of importance of SWPBIS implementation across Likert-type scale items related to the domains of systems procedures

Although calls to expand integrated employment opportunities have permeated recent legislative and policy initiatives in the United States, substantial numbers of adults with severe disabilities still work in segregated settings. We examined findings from events held in eight communities to solicit the views of parents and other family members (n = 93) on the state’s shift from sheltered to integrated

This study examined the differential impact of implementing the Self-Determined Learning Model of Instruction (SDLMI) alone with implementing the SDLMI combined with Whose Future Is It? with transition aged students with intellectual disability in a cluster randomized trial in the state of Rhode Island. The state of Rhode Island is implementing systemic change in transition services and supports under

Progress toward competitive integrated employment (CIE) for people with intellectual and developmental disabilities (IDD) over the last 40 years has been mixed. Despite evidence showing that supported employment interventions can enable adults with IDD to effectively get and keep jobs, national rates of integrated employment remain below a third of the working-age population. Progress is being made