About Whom Are We Talking When We Use Intellectual and Developmental Disabilities?

Importance: Communicating clearly about who is included in a population group is a critical element to effective dissemination and knowledge transfer. This narrative review highlights the inconsistency as it relates to communicating about individuals with intellectual disability (ID) and developmental disability (DD).

Observations: There is enormous variability in the use of definitions and abbreviations in the field of intellectual disability and developmental disabilities.

Preliminary Reliability and Validity of the Self-Determination Inventory: Student Report French Translation.

There is a strong and growing focus on self-determination in French-speaking countries, and this pilot study reports the technical adequacy of the Self-Determination Inventory: Student Report (SDI:SR) French Translation. Data were collected with 471 French-speaking youth with and without disabilities in Canada (Quebec), Switzerland, France, and Belgium. Key findings showed it was feasible to use 20 (of 21) items to represent the self-determination construct in the French-speaking sample.

Self-Advocate and Family Member Experiences With Supported Decision Making.

Supported decision making (SDM) is a needed focus of policy and practice to enhance opportunities for people with disabilities to exercise self-determination as they are supported to make decisions about their life. This study used content analysis to analyze five focus groups comprised of 27 adults with intellectual and developmental disabilities (IDD) and 16 family members to understand how people with IDD use supports for decision making and how families support decision making. People with IDD and family members described a range of strategies and supports they used for decision making, including engaging trusted supporters, accessing technology, and using early experiences to build decision-making skills.

Impact of Educational Placement on the Goal Attainment Outcomes of K-6 Students With Complex Needs Across Academic and Social-Behavioral-Communication Domains.

Students with complex support needs have intense and frequent support needs for learning and participating across multiple domains. Addressing those needs in a comprehensive manner is the purpose of special education, which is accomplished through instructional and Individualized Education Program (IEP) goals. Yet simply setting goals is insufficient; to facilitate positive student outcomes, there is an inherent expectation that students will meet those goals to achieve their potential.

Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

Self-Determination Research: Current and Future Directions.

This article summarizes the history, current status, and future directions of self-determination research across the globe, with a focus on applications to the education of students with intellectual and developmental disabilities and their transition from school to adult life. Research on the development, implementation, and outcomes of self-determination assessments and interventions is explored. Causal Agency Theory, a theoretical framework for understanding the development of self-determination as a psychological construct, is reviewed, along with research on the importance of self-determination for inclusion, psychological growth, and overall well-being.

Self-determination in minoritized autistic adolescents and adults.

Self-determination plays an important role in outcomes in autism and shows intersectional disparities. Yet, little is known about the role of individual differences or social drivers of health in the development of self-determination. Understanding these factors is key for developing effective supports.

Instructional Content and Self-Determination in Individualized Education Program Annual Goals for Students With Extensive Support Needs.

Under the Individuals With Disabilities Education Act, individualized education program (IEP) annual goals are required to enable students with disabilities to be involved in and make progress in the general education curriculum and to address other educational needs. This study reports findings from a content analysis of the annual goals in 88 IEPs for K-12 students with extensive support needs. Results reflect a lack of comprehensive academic content goals to promote involvement and progress in the general education curriculum, and limited opportunities for students to develop skills associated with self-determination.

Understanding the Impacts of COVID Policy Changes on Access to Needed Supports for Families With Children Receiving Medicaid HCBS Waiver Services.

The COVID-19 pandemic necessitated rapid policy changes to address new demands on disability service systems. A statewide survey of families of people who received Medicaid funded home- and community-based (HCBS) long-term services and supports (LTSS) in one Midwestern state was conducted to understand (1) utilization of services allowed under the policy change, (2) family's experiences if their family member with a disability accessed the services, and (3) family's perspectives on the need for ongoing changes in the future. Overall, the results suggest that a subset of families took advantage of flexibilities introduced into service delivery models during the pandemic, and the changes-when accessed-addressed important needs that a large majority of families that accessed the services hoped would be sustained in the future.

The Right to Science: Centering People With Intellectual Disability in the Process and Outcomes of Science.

The right to science has been identified in multiple human rights treaties; however, there has not been a clear framework for how governments or research organizations can advance this right particularly ensuring equitable engagement of people with intellectual disability (ID) in the process of scientific research. Although the feasibility and impacts of engaging people with ID in the process of science have been repeatedly demonstrated there remain systemic barriers including ableism, racism, and other systems of oppression that sustain inequities. Researchers in the ID field must take steps to dismantle systemic barriers and advance participatory approaches that advance equity in the process and outcomes of science.

The Self-Determination Inventory: Student Report American Sign Language Translation.

Research literature and community narratives both emphasize the importance of self-determination in the lives of deaf youth. This paper describes the development, initial validation, and potential applications of a translated measure of self-determination for deaf youth, the SDI:SR ASL Translation (SDI:SR ASL). A sample of 3,309 young people who completed the SDI:SR, of whom 392 were deaf, was used in this validation study.

Understanding Career Goals Set by Autistic Youth.

Importance: Recent years have seen a shift to strengths-based approaches promoting self-determination and career-related interests among autistic youth. Research is needed to understand the career-related goals set by autistic youth on the basis of their interests.

Objective: To descriptively explore the career design goals set by autistic youth engaged in the self-determined career design model (SDCDM) intervention.

Psychometric Properties of Self-Determination Inventory: Student Report Among Chinese Students With and Without Intellectual and Developmental Disabilities.

This study explores the psychometric properties of Self-Determination Inventory: Student Report (SDI:SR) in students with intellectual and developmental disabilities (IDD) and without disabilities in China. The paper-and-pencil version of SDI:SR Chinese Translation (SDI:SR Chinese) was used to explore self-determination across students with IDD (n = 245) and students without disabilities (n = 315) from 16 schools across six cities in China. We examined the factor structure of the measure, conducted analysis of measurement invariance, and compared the latent means across students with IDD and without disabilities.

Advancing the Personalization of Assessment and Intervention in Autistic Adolescents and Young Adults by Targeting Self-Determination and Executive Processes.

As autistic adolescents and young adults navigate the transition to adulthood, there is a need to partner with them to identify strengths and needed supports to enable goal-directed actions. This article conceptually integrates research on self-determination, defined by Causal Agency Theory, and executive processes in autism to provide direction for future research and practice. We describe how integrating research on self-determination and executive processes could enable autistic adolescents and young adults to be engaged in the process of assessing executive processes and self-determination.

Impact of Different Pairings of Respondents on Scores on the Supports Intensity Scale-Adult Version (SIS-A).

This secondary analysis examined the impact of respondent-level factors on scores on the Supports Intensity Scale-Adult Version (SIS-A) to determine if there were patterns of differences in SIS-A scores based on the number of respondents and the pairings of respondents that were included in SIS-A interviews. Results indicated that having fewer respondents led to a greater variability in SIS-A scores whereas having more respondents led to higher mean, overall support need scores. When respondents included an adult with intellectual disability (ID) the mean score was significantly lower.

Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review.

The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination.

Promoting Career Design in Youth and Young Adults with ASD: A Feasibility Study.

Recent calls by transition researchers in postsecondary transition have advocated for new approaches to transition services focused on career design, which uses career-related experiences based on a person's interests to develop goal setting and problem-solving abilities. Youth and young adults with autism spectrum disorder (ASD), who often have limited opportunity for career-related experiences, could benefit from career design intervention. This study examined the feasibility of using the Self-Determined Career Design Model (SDCDM) to enhance transition-related outcomes for twenty-five youth and young adults with ASD.

Goal attainment scaling-community-based: A method to incorporate personalized outcomes into intervention research with youth and adults on the autism spectrum.

Among people with autism-all who have the same diagnosis-there are major differences on a nearly limitless number of areas, such as language, daily living skills, intellectual ability, sensory difficulties, and physical and mental health diagnoses. Despite these many differences, the targeted outcomes of intervention studies are often measured the same way across autistic adults, including outcomes such as getting a job, achieving greater independence, or getting more services. People have different goals and abilities, and it is important to have a way for intervention studies to measure outcomes in a way that is more personal to each individual.

Self-Determination Assessment in Adults With and Without Intellectual Disability.

This article analyzes the reliability and factor structure of the Self-Determination Inventory: Adult Report (SDI:AR) in adults with and without intellectual disability. There is a critical need for contemporary assessment tools given the emphasis on self-determination outcomes in disability supports and services. The findings suggest that the same set of items can be used across adults with and without intellectual disability.

Goal Attainment Scaling: A Framework for Research and Practice in the Intellectual and Developmental Disabilities Field.

Goal setting and attainment is often a targeted outcome in the intellectual and developmental disabilities field; however, standardizing the measurement of attainment of individualized goals is challenging. The purpose of this article is to introduce a four-domain framework that provides a series of questions to research and evaluation teams in planning for the use of goal attainment scaling (GAS) as an outcome measure at the individual or aggregate level. We intend to stimulate discussion and ongoing work to further systematize how GAS is used in (a) intervention research to establish evidence-based practices and (b) practice to assess the extent to which interventions and supports lead to intended outcomes.

Employment Trends in Rhode Island From 2011 to 2017 for Adults With Intellectual Disability and Developmental Disabilities.

This study reports on state-level data in Rhode Island on employment and non-work activities of adults with intellectual and developmental disabilities receiving services between 2011 and 2017. The goal was to examine the complex patterns of change over time in individual-level employment outcomes and the potential short-term impacts of a consent decree entered into by the state of Rhode Island to address integrated employment outcomes. Findings suggest that policy initiatives such as the consent decree can lead to reductions in reliance on facility-based work, but also highlight the importance of planning for the transition to competitive, integrated employment and not simply a shift toward non-work activities.

The Supports Intensity Scale Children's Version-Icelandic Translation: Examining Measurement Properties.

An innovation in developing the Supports Intensity Scale-Children's Version (SIS-C) was the adoption of latent variable modeling approaches to norm development. In regard to translated versions of the SIS-C, the latent modeling approaches provided opportunities to leverage the large standardization sample generated in the United States (n = 4,015) to generate translation-specific norms from data collected on smaller samples in other countries and enable future cross-cultural analyses. In this study, data were collected on children in Iceland who received special education services (as defined and delivered in Iceland), a more diverse group of children with disabilities than the U.

Examining the Impact of the SDLMI and Whose Future Is It? Over a Two-Year Period With Students With Intellectual Disability.

The purpose of this study was to examine self-determination outcome data in the year following a one-year cluster randomized controlled trial (C-RCT) comparing the impacts of a Self-Determined Learning Model of Instruction (SDLMI) only condition to a SDLMI + (SDLMI + WF) condition. Using multilevel B-spline model analysis with Bayesian estimation, we examined ongoing patterns of growth after the trial ended and all students were exposed to SDLMI + WF. The findings suggest that the inclusion of an additional year of outcome data provided additional insight into the impact of more intensive intervention conditions over time.

Using a Multidimensional Model to Analyze Context and Enhance Personal Outcomes.

This article describes a multidimensional model of context that identifies, defines, and explains three key properties of context: multilevel, multifactorial, and interactive. The use of this model to drive a context-based enhancement cycle is also described. The enhancement cycle involves four steps: (a) identifying current interactions that influence personal goals and outcomes; (b) targeting the interaction that will have the highest impact on selected outcomes for the individual; (c) manipulating the contextual factors that will positively influence the interaction; and (d) evaluating the impact of the manipulated interaction on personal outcomes.