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. This mixed-methods convergent study examined self-determination in racially and ethnically minoritized autistic individuals and caregivers. Participants ages 13 to 30 ( N = 73) varying widely in language and cognitive ability and caregivers ( n =52) completed the Self-Determination Inventory. Autism traits and sense of community predicted caregiver report of self-determination, and autism traits and language predicted self-report of self-determination, consistent with DisCrit and Diversity Science. Self-Determination Inventory interviews of a subset of participants ( n = 13) and caregivers ( n = 9) were analyzed using inductive thematic analysis. Themes pointed to the role of the intersection of race and disability in shaping self-determination. Altogether, findings point to the importance of these frameworks, environmental influences, and multi-informant perspectives in characterizing self-determination. Future work should focus on the impact of environmental factors in self-determination in minoritized autistic individuals during the transition to adulthood.

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. Findings also show a focus within goals on student compliance rather than the development of meaningful skills and knowledge. Implications for research and practice are provided.

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. Results provide preliminary support for the use of SDI:SR ASL with deaf youth. Findings also indicate that deaf youth who take the SDI:SR ASL score more similarly to youth without disabilities taking the SDI:SR than youth with disabilities. The SDI:SR ASL can be an important tool for researchers and practitioners to better understand self-determination among deaf youth and facilitate continued development of self-determination skills.

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. DESIGN: Content analysis was used to analyze the types of goals set by youth during intervention. Two researchers separately reviewed the goal set by each autistic youth (one goal per youth) and determined categories for each goal. SETTING: Preferred community location (usually the youth's home) in an urban Midwestern city. PARTICIPANTS: Twenty-one autistic youth. INTERVENTION: SDCDM. OUTCOMES AND MEASURES: Participants set goals as part of the SDCDM, which were recorded using Goal Attainment Scaling (GAS). Researchers used GAS to support each participant in setting a measurable and objective goal and describing criteria for meeting the goal. RESULTS: Categories included enhancing self-management, obtaining employment, exploring career opportunities, enhancing learning, and enhancing self-advocacy. CONCLUSIONS AND RELEVANCE: The findings from this study indicate that autistic youth set goals related to obtaining employment and enhancing generalizable 21st-century skills, such as self-advocacy and self-management. What This Article Adds: The SDCDM is a tool occupational therapy practitioners can use to support youth in setting and working toward career goals.

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. Findings suggest that the data fit a one-factor model better than a three-factor model. We found greater variability in self-determination among students with IDD than students without disabilities. However, the two groups did not differ in latent means.

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. Statistically significant gains were seen in goal attainment and occupational performance. This study provides preliminary evidence that the SDCDM can feasibly enhance outcomes for 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.

LAY ABSTRACT: 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. To address this issue, we developed a new approach-called "Goal Attainment Scaling-Community-based" or GAS-CB-to measure individualized outcomes across different research settings. In this article, we describe the need for individualized outcomes in autism intervention research and current approaches to gathering these outcomes, with our discussion focused on a method called goal attainment scaling. We then describe reasons why current goal attainment scaling approaches might not be useful in intervention research that takes place in the community. Finally, we discuss a new goal attainment scaling approach (GAS-CB) that can be flexibly used for research participants with very different characteristics.

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. However, there were complex influences of pairing an adult with ID with either a professional or family member on SIS-A scores. Implications for administering and using the SIS-A are discussed.

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. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

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. The goal is to promote a clear planning process to inform data collection on individualized goal attainment outcomes that are rooted in goals and outcomes valued by people with intellectual and developmental disabilities.

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. However, there are significant differences in overall self-determination across adults with and without intellectual disability, with adults with intellectual disability scoring lower on the SDI:AR. Implications for research and practice are discussed.

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. We discuss how this can better inform personalization of supports for self-determination interventions by focusing on support needs related to executive processes, including inhibitory control and cognitive flexibility, from a strengths-based perspective. We discuss how this can enable self-determination interventions that promote outcomes aligned with the values of the autistic community.

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. Further, the data support the notion that the best predictor of integrated employment over time is previous experiences in integrated employment (not facility-based or other work or non-work activities), suggesting the role of ongoing supported employment and transition services that create and support the maintenance of integrated employment.

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.S. sample. This provided a unique context to explore cross-cultural differences. Findings indicated the structure of the SIS-C (i.e., seven support need domains organized under an overall support needs construct), was supported in the Icelandic context. However, findings also suggested that supports planning teams in Iceland must consider specific age-related factors that differ from other cultural contexts.

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 + Whose Future Is It? (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. Specifically, after the initial year of implementation, the SDLMI + WF condition predicted greater annual gains than the SDLMI only condition, unlike findings in the first year which reflected the opposite pattern. This evidence suggests a nonlinear growth pattern over multiple years of intervention with more intensive interventions. Implications for future research and practice are discussed.

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. The article concludes with a discussion of the implications of using a multidimensional model of context to enhance personal outcomes.

Going beyond Environment to Context: Leveraging the Power of Context to Produce Change.

This article discusses the processes and implications of going beyond environment to context. The article (a) provides an operational definition of context; (b) describes a multidimensional model of context that views context as being multilevel, multifactorial, and interactive; (c) describes how conceptual models of quality of life, human rights, and human functioning can be used in conjunction with the multidimensional model of context to identify opportunities and develop context-based change strategies that improve quality of life, human rights, and human functioning outcomes; and (d) describes a four-step approach to leveraging an understanding of context to produce change. The article concludes with a discussion of the advantages of and barriers to moving beyond environment to context.