Association of University Centers on Disabilities

Self-determination has received increasing interest worldwide, both as a key concept in disability policy and as a guiding principle for best practices and lifelong learning. The study examined correlations between the Portuguese versions of the Self-Determination Inventory (SDI) and the Self-Determination Scale. A total of 168 participants with and without intellectual and developmental disabilities (IDD) aged 13-60 years (24.7 ± 12.2) completed both instruments. Moderate and significant correlations were found, providing preliminary criterion evidence for the Portuguese translation of the SDI. The main findings include: (1) participants with IDD reported fewer self-determination actions, (2) women scored higher than men and (3) academic qualifications had a limited influence on self-determination scores. The SDI PT translation is a valid and reliable tool that supports the operationalisation of the construct within the Portuguese context. This study also contributes to a deeper understanding of how self-determination manifests across diverse populations, offering insights into inclusive practices and future theoretical developments.

Abstract Self-determination is a fundamental human right and a dispositional characteristic manifested when people act or cause things to happen as they set and work towards goals in their lives. In the United States, researchers have established a positive relationship between higher self-determination status and in-school and postschool outcomes for students with intellectual disability leading to multiple assessments and interventions being developed to create self-determination opportunities for students with intellectual disability. On the other hand, in Japan, although educational policy and practice indicate the importance of embedding self-determination in daily instruction, there has not been a reliable assessment to understand self-determination status for students with intellectual disability to inform individualized self-determination instruction. Recently, in the U.S., a new self-determination assessment informed by Causal Agency Theory, the Self-Determination Inventory: Student Report (SDI:SR) was developed and validated for youth and young adults with and without disabilities aged 13 to 22. This paper reports the results of a validation study of the Japanese translation of the SDI:SR with high school students with intellectual disability. Using Confirmatory Factor Analysis (CFA), the factor structure of the SDI:SR Japanese translation was established. There were patterns of differences in the sample, that can inform future work in Japan and internationally with a focus on ensuring that efforts to advance self-determination are aligned with the educational system and cultural values of diverse groups of students with intellectual disability.

The COVID-19 pandemic has been hard for everyone. For the estimated seven and a half million people in the United States who live with intellectual disability (Residential Information Systems Project, 2020), it has been very hard. Lives have been disrupted by lost jobs, lack of access to friends/family, and challenges finding enough staff to provide supports and needed healthcare. Studies have shown that people with IDD are at a much greater risk of getting COVID-19 and dying from it (Cuypers et al., 2020; Gleason et al., 2021; Kaye, 2021; Landes, Turk, & Ervin, 2020; Nygren & Lulinski, 2020). Without question, people with intellectual and developmental disabilities (IDD) struggled as the COVID-19 pandemic began and as it has continued. Too many were isolated from friends and family for far too long. Too many were lonely and bored. Too many have not received the support they have needed during the pandemic. Far too many were denied treatment and far too many have died. As a nation we must reflect on what has happened and listen to people with IDD and their families about their experiences. This commentary reflects on the implications of COVID-19 for research, policy, and practice through the lens of people with IDD.

Individuals with intellectual and developmental disabilities (IDD) are at high risk of co-occurring mental health conditions, including major depressive disorder, bipolar disorder, anxiety disorders, psychotic illnesses, impulse control disorders, and others. Because of symptoms associated with these illnesses and with the disabilities themselves, these individuals are often served in a mental health service system framework. However, treatment for them in these settings has typically not been sufficiently nimble, knowledgeable, or adept. Most mental health professionals receive little training about the needs of this population, and system structures typically bifurcate care, when, in reality, conditions can be complex and overlapping. In this first of two articles on care for persons with IDD in the mental health system, the authors provide a clinical overview of these neurodevelopmental disorders and of mental health and other conditions that co-occur with IDD. Considerations and challenges for treating this population in the mental health system include early recognition of mental health conditions, which often requires caregiver and family input, as well as information from a variety of additional collateral sources; the importance of trauma-informed and person-centered care; the promotion of self-determination through use of decision supports; use of approaches such as applied behavior analysis to develop a frame to address challenging behaviors; and the need to properly assess and provide thoughtful pharmacologic intervention when appropriate. The ability of individuals with IDD to thrive in a wide range of community integration opportunities depends on many factors, and clinicians must understand and use the available approaches for treating them.

Non-invasive prenatal testing (NIPT) is moving the goalposts for the detection of genetic disorders such as Down Syndrome (DS). NIPT not only misses fewer cases than first trimester combined screening, but also has fewer false positive results. Unlike with neural tube defect (NTD) where screening to detect affected pregnancies was welcomed, NIPT for trisomy has met with surprising resistance. This paper argues that special interest groups have been allowed to usurp influence beyond what is balanced in the discussions, at the expense of the fight against sex selection. The fear of parents of children with DS, that their children's rights might be devalued, must not trump the autonomy of pregnant women to decide what is best for their own family and what they can cope with emotionally and financially. Society, however, must ensure that resources for caring for those with DS and other disabilities remain adequate. Here, recent articles are also reviewed.

Choice and autonomy are critical in healthy child and adolescent development. In developmental psychology, the term autonomy is frequently used to discuss developmental milestones pertaining to choice and expressing preferences in one’s environment. In this chapter, we examine the development of choice-making and preferences and the relationship of these two constructs to the development of autonomy. Further, we examine the relative contribution of choice and autonomy to other important areas of development, including motivation, self-determination, and adolescent development, and then discuss how choice-making and preferences can be fostered in children and adolescents with disabilities. This chapter concludes with a discussion of ways in which these choices and autonomy can be promoted at home and in school and doing so promote more positive school and life outcomes.

Foundations for self-determination begin in early childhood for children with disabilities with the onset of self-regulation and engagement in activities at home, school, and in the community. This article describes the development and preliminary results of an intervention model that encourages collaborative practices for parents and teachers around short-term goal setting to adjust environments for young children with special needs or at risk for delay. The Foundations Intervention was used with 48 children in authentic early childhood settings and involved parents, teachers, and a facilitator to enhance children's self-regulation and engagement at home and school. Results showed feasibility of the intervention; positive child outcomes in goal attainment, self-regulation, and engagement measures were also evident. When parents and teachers communicated about a child's strengths and needs within routines at home and school, this appeared to strengthen parent and teacher connections and helped children become more engaged or regulated in daily activities.

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Reading Recovery, a meaning-based reading program designed for young children at risk of reading failure, is widely implemented across the United States. We discuss the recent Reading Recovery $45 million four-year i3-funded scaleup study that was designed to “cover the expansion of Reading Recovery around the U.S.” (May, Sirinides, Gray, & Goldsworthy, 2016, p. 1). While one of the two goals of the study was to determine the long-term impact of Reading Recovery, this study, described by its authors as “highly successful” (p. 4), found a “not significant” long-term effect on students’ reading skills. Subsequent Reading Recovery publications have failed to mention this “not significant” effect. With the exception of year one of the study, there are no publicly available test score data for the students when they were in Grades 2 or 3. Further, it appears that the actual lowest achieving students (special education students, students retained in first grade, and others) were systematically excluded from Reading Recovery instruction. Overall, there is very limited evidence of Reading Recovery’s efficacy as an effective long-term reading intervention. We discuss the limitations of the Reading Recovery approach, how Reading Recovery can be improved, and strongly recommend that schools do not adopt this program unless it incorporates all components of evidence-based reading instruction. Subscribe to LDMJ

Abstract This qualitative inquiry focused on the perceptions that Chinese families of children with developmental disabilities have pertaining to their needs. Data were collected through focus group discussions and in‐depth interviews; transcript analysis relied on the constant comparative method. We identified seven categories of needs, subsumed under the following three thematic areas: survival needs, sufficiency needs, and enhancement needs. Survival needs refer to maintaining basic family existence and include (1) financial needs and (2) physical health needs. Sufficiency needs refer to families' needs for social inclusion, educational support, and relationships with others, and include the categories of (3) higher quality education and therapy for the child; (4) home‐based education and information for parents; and (5) social inclusion for both parents and the child. Finally, the third theme relates to enhancement needs, defined as families' needs to realize family growth and development for a better family life; this includes the categories of (6) emotional health and (7) future planning. The authors found sufficiency needs were more child focused among respondents and that survival and enhancement needs for families in this study were directly linked to the whole family unit in promoting the family's overall functioning. The dynamic nature of needs suggests that more than one need may motivate families’ desires for enhanced family quality of life.