Advance directives need full legal status in persons with dementia.

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer's patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer's patient and (2) claiming that there is no longer any personal equivalence between the AD's creator and the subject of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer's patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer's patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation.

Partners in Care: Consumer Experiences With Professional Services.

Consumer experience is a key driver of successful health and education outcomes. Yet, the key factors influencing consumer experiences with care are not fully understood. The aim of this study was to understand, from the perspective of people receiving health care or education services, factors that determine positive and negative experiences with care. We interviewed people who received services, including occupational therapists, and analyzed recordings of the interviews using content analysis. Themes emerged from positive experiences with care on a continuum from "Acknowledges Me" to "Shares Problem Solving." Themes from negative experiences were also on a continuum from "Lacks Curiosity" to "Disregards." A fifth theme emerged from occupational therapists, describing "transformational insights" regarding how their personal experiences receiving care affected their practice. The findings from this study align with core OT constructs and advances understanding of authentic partnerships with people receiving professional services.

Partners in Care: Consumer Experiences with Professional ServicesThis study sought to understand, from the perspectives of people receiving services, factors that determine positive and negative experiences with care. We interviewed people who received health care or educational services, which are two settings where occupational therapists practice. We analyzed the interviews by identifying experiences participants had receiving care and grouping those experiences into common themes. Participants generally associated positive experiences with provider actions that recognized and validated their perspective and experiences or that partnered with the person in planning for their care. Participants associated negative experiences with provider actions that prioritized procedural care over individualization, or that actively disregarded the person which created feelings of shame, anger, and despondency. Occupational therapists in our study who received care shared similar experiences to people who were not trained as health care providers. Our findings highlight the importance of partnering with people receiving care, which is often at odds with training on expert models of care provision. We suggest that partnering in care is a skill set that providers need to cultivate through ongoing reflection and mentorship.

Race and Ethnicity Reporting in Occupational Therapy Research Among Autistic Youth.

Historically marginalized racial and ethnic groups are underrepresented in autism research broadly; however, patterns of inclusion in occupational therapy research are unknown.In this secondary data analysis, we examined race and ethnicity reporting across articles included in a systematic review of evidence related to occupational therapy practice with autistic individuals <18 years (2013-2021).Two team members reached >90% interrater coding agreement in race and ethnicity reporting across articles in ADLs/IADLs, education/work, play, sleep, and social participation in clinics, homes/communities, and schools.Intervention outcomes of ADL/IADLs (66.7%) and play (66.7%) had low rates of reporting, while social participation in schools (100%) and education/work (100%) had higher rates of reporting. Sample diversity was greatest among research in schools and most limited in clinic-based settings.Systemic racism that limits individuals' participation in occupational therapy research perpetuates racial and ethnic health inequities among autistic children and adolescents.

Who is included in occupational therapy research among autistic youth?In research that guides occupational therapy practice with autistic youth, we need an understanding of the participants that were included in the research. Historically marginalized racial and ethnic groups are typically not included in the research, so we examined articles that informed occupational therapy practice for autistic youth. We found that different areas of intervention (e.g., play, education/work) had different rates of reporting. The most diverse samples were included in schools and were most limited in clinic-based settings. This is important because systemic racism can influence occupational therapy research and practice.

Coping with sensory changes after stroke: a qualitative study.

BACKGROUND: Coping strategies were found to predict success in rehabilitation. Research is lacking in identifying the specific coping strategies used to adjust to sensory changes after stroke. OBJECTIVE: This study utilized a qualitative descriptive method to understand how individuals handle sensory changes after stroke. METHOD: Researchers developed open-ended questions with probes to facilitate semi-structured interviews. Thirteen stroke survivors younger than 75 years old who were 1-5 years past their stroke were recruited. Researchers used an inductive content analysis approach to analyze the data gathered from the interviews. RESULTS: Two themes were identified; Coping strategies and the Amount of therapy received targeting sensory changes. CONCLUSION: Results from this study can inform occupational therapists about what strategies stroke survivors use to cope with sensory changes so that similar strategies can be implemented in therapy. Rehabilitation in the early stages of recovery can help stroke survivors identify adaptive strategies to cope with sensory changes.

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.

Clinic-Based Interventions to Support Social Participation for Autistic Children and Adolescents (2013-2021).

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from clinic-based studies to support social participation for autistic1 children and adolescents (birth to 18 yr).

Interventions to Support Social Participation for Autistic Children and Adolescents in Schools (2013-2021).

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support social participation in school contexts for autistic1 children and adolescents (birth to 18 yr).

Interventions to Support Participation in Sleep for Autistic Children and Adolescents (2013-2021).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support participation in sleep for autistic1 children and adolescents (birth to 18 yr).

Interventions to Support Participation in Education for Autistic Students (2013-2021).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support autistic1 children and youth (up to 18 yr old) and focuses on participation in education settings.

Interventions to Support Participation in Play for Autistic Children and Youth (Dates of Review: 2013-2021).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support participation in play for autistic1 children and adolescents (birth to 18 yr).

Interventions to Support Participation in Basic and Instrumental Activities of Daily Living for Autistic Children and Adolescents (2013-2021).

Systematic Review Briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings from the systematic review on interventions to support participation in basic and instrumental activities of daily living by autistic1 children and adolescents (birth to 18 yr).

Interventions to Support Social Participation for Autistic Children and Adolescents in Homes and Communities (2013-2021).

Systematic review briefs provide a summary of the findings from systematic reviews developed in conjunction with the American Occupational Therapy Association's Evidence-Based Practice Program. Each systematic review brief summarizes the evidence on a theme related to a systematic review topic. This systematic review brief presents findings to support social participation for autistic1 children and adolescents (birth to 18 yr) in homes and communities.

Prevalence Models to Support Participation: Sensory Patterns as a Feature of All Children's Humanity.

Purpose: Research about children tends to consider differences from expected patterns problematic, and associates differences with disabilities [e.g., Autism, attention deficit hyperactivity disorder (ADHD)]. When we focus on disabilities and consider differences automatically problematic, we miss the natural variability in the general population. The International Classification of Functioning, Disability and Health (ICF 11) acknowledges that the experience of disability results from interactions between "environmental" and "personal" factors which determine the person's capacity to participate. The purpose of this study was to examine sensory patterns across a national sample of children in the general population and samples of children with disabilities to investigate the extent to which differences in sensory processing are representative of natural variability rather than automatically problematic or part of a disability. Materials and Methods: We employed descriptive statistics and chi-square tests to examine sensory processing patterns in children in the general population and autistic children and children with ADHD. We used standardization and validity data from the Sensory Profile 2 to conduct analyses. Results: Consistent sensory patterns exist across all groups. Children in all groups had different rates of certain patterns. Conclusion: Since children in all groups have certain sensory patterns, we cannot associate differences with problematic behaviors. Children participating successfully with all sensory patterns might provide insights for universal design that supports participation of all children.

Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned are They?

Introduction: The expectations individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents' own expectations and the extent to which autistic adolescents and their parents agree about the future. Methods: We used a scoring procedure to "quantitize" semi-structured interview data about what 46 adolescent-parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13-19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads' interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed). Results: Proportions of agreement and disagreement did not significantly differ, demonstrating moderate agreement. Notably, fewer than half (37.0-47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents' and parents' views differed, adolescents were significantly more likely to have a higher expectation across all three areas (ps < 0.01). Conclusions: Future research is needed to examine differences in autistic adolescents' and parents' visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning.

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.

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.

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.

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.