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Due to systemic barriers, Latinx parents of youth with intellectual and developmental disabilities (IDD) report having limited involvement in transition planning. To facilitate parent involvement in transition planning, it is critical to solicit feedback from Latinx families to inform the content and mode of a transition planning intervention. The purpose of this study was to explore Latinx parents' knowledge and preferred mode for a transition planning intervention. Twenty-eight Latinx parents of transition-aged youth with IDD completed surveys and focus groups. Participants reported wanting an intervention to focus on school-based transition planning and adult services; to a lesser extent, participants wanted information about natural supports. Regarding modality, participants desired in-person or online training (versus a brochure). Implications for research and practice are discussed.

Given the wide heterogeneity in the autism population, one challenge for intervention studies is to identify outcome measures that have similar meaning across individuals. This is particularly pronounced in intervention studies of adults with autism spectrum disorder, where outcomes such as employment, independence, or community living are common targets. However, these outcomes can be more challenging to obtain for those who have greater support needs, for example, and therefore may be more or less salient depending on the sample under study. Goal attainment scaling can help address this issue as it allows individuals to identify personally meaningful goals and track progress toward these goals. While goal attainment scaling is gaining popularity in the autism field as an outcome measure, most intervention studies that use goal attainment scaling have been situated in clinical or school settings. Generating reliable and scalable goals outside of these settings can be challenging. In this article, we describe the promise of goal attainment scaling for tailoring individualized outcomes among youth and adults with autism spectrum disorder and discuss the challenges of current goal attainment scaling methods in community-based intervention research. We then describe a new goal attainment scaling approach that is rigorous, practical, and can be used across research settings to measure individualized outcomes.

Research suggests that child problem behavior and poor family-school partnerships contribute to maternal stress in families of children with autism spectrum disorder (ASD). However, most extant research focuses only on White families even though Latina mothers of children with ASD experience greater systemic barriers impacting parent well-being and access to school services. Using individual interviews, this study investigates the pattern between school perceptions, child behavior, and psychological well-being among 13 Latina mothers of school-aged children with ASD. This sample was selected based on their elevated scores on the Difficult Child subscale of the Parenting Stress Index. Findings indicate that all participants reported feeling fear, frustration, worry and stress due to their child's behavior. Specifically, participants worried about their child's safety and expressed frustration with their child's problem behavior. Notably, participants reported mixed responses regarding the schools' actions to address their children's behavior. Implications for research and practice are discussed with respect to family-school partnerships among Latina mothers.

Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.

Internationally, parents of children with intellectual and developmental disabilities have historically engaged in advocacy leading to compulsory education for their children. However, few parents have reported civic engagement. Although empowerment is related to parent advocacy, it is unclear whether empowerment relates to civic engagement. Thus, our study examined parent and child correlates of empowerment and civic engagement, and the relation between empowerment and civic engagement among 235 parents of children with intellectual and developmental disabilities across five states in the United States. Gender and special education knowledge were significant correlates of empowerment and civic engagement. There was a significant positive correlation between empowerment and civic engagement. Implications regarding future research and ways to promote parent empowerment and civic engagement are discussed.

Family-professional partnership is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD), including autism spectrum disorder (ASD). Latinx families face systemic barriers when participating in educational decision-making for their children with IDD. Few studies have examined the effectiveness of advocacy trainings among Latinx families of children with IDD, including ASD. The purpose of this pilot study was to examine the effectiveness and feasibility of the "Familias Incluidas en Recibiendo Mejor Educación Especial" (FIRME), an advocacy program for Latinx families of children with IDD, with respect to increasing special education knowledge, advocacy, empowerment, and receipt of services; and decreasing stress. After completing the FIRME program, participants demonstrated significantly increased: special education knowledge; advocacy; and empowerment.

Although the Individuals With Disabilities Education Improvement Act (IDEA) mandates parent participation in their children's education programs, the implementation of IDEA results in parent effort beyond participation, specifically, an expectation of advocacy. To date, research on the advocacy expectation is mixed, with some parents perceiving advocacy as an obligation to ensure appropriate services for their children, whereas others argue it is unreasonable and has cultural dissonance, disadvantaging some parents. We examined parent perspectives of the advocacy expectation in special education through 19 focus groups with 127 parents of children with disabilities across four states. Findings included a nuanced understanding of the advocacy expectation, with participants reporting the importance of advocacy and some describing that advocacy was part of their social role. However, under adversarial circumstances with school personnel, participants described feeling overwhelmed because the advocacy expectation felt more difficult than it needed to be. We discuss implications for policy and practice.

In the past, parents of children with disabilities have spearheaded several policies for individuals with disabilities. However, little is known about their experiences with legislators. To address this gap, focus groups and surveys about legislative advocacy were conducted with 127 parents of individuals with disabilities across four states. The purpose of the study was to explore parent perceptions about experiences with legislative advocacy including the frequency of, strategies for, and barriers to legislative advocacy. Descriptive statistics were conducted to analyze the survey data; constant comparative analysis was used to analyze the focus group data. Participants reported engaging in various forms of legislative advocacy. Participants shared positive and negative experiences interacting with legislators, including individual and collective advocacy efforts. Some participants did not engage in legislative advocacy due to intimidation. Relationships facilitated legislative advocacy for participants. Implications for future research about legislative advocacy and practices to facilitate legislative advocacy are discussed.

Background: As adults with intellectual and developmental disabilities (IDD) have longer lives, parents may remain caregivers into old age. In addition, it is unknown who will fulfil caregiving roles after parents are no longer able to be caregivers. In the current study, we explored the nature (e.g. number of hours of caregiving) and correlates of parental caregiving for their adult offspring with intellectual and developmental disabilities and their future caregiving plans. Method: In the United States, data were collected from 334 parents of adults with intellectual and developmental disabilities via a national survey. Results: Altogether, 55% of the sample spent more than 15 hr conducting caregiving per week. Individual characteristics (e.g. maladaptive behaviour and functional abilities) and parent characteristics (e.g. physical proximity of the adult with intellectual and developmental disabilities and caregiving ability) positively correlated with caregiving hours. Notably, 38.58% of participants were unsure who would fulfil caregiving roles. Conclusion: Implications for research about caregiving and practice are discussed.

Internationally, it has been recognized that parent involvement is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD). Parent involvement often includes parents advocating for their children. However, many parents face barriers when advocating to obtain appropriate special education services for their children with IDD. In the United States, Latinx families face greater systemic barriers (e.g., language and cultural differences) to access services for their own children with IDD. To this end, parents may turn to parent advocacy training programs to learn about special education and feel empowered to advocate for school services for their own children and other families of children with disabilities. Yet, it is unclear how Latinx families advocate for services for their own children and for other Latinx families of children with disabilities after attending an advocacy program. We designed a study to explore the advocacy experiences of eight Latinx families one year after attending an advocacy program. Participants reported that they used three advocacy strategies when advocating for their own children with disabilities: knowledge of special education law, non‐adversarial advocacy strategies, and requests for data. Notably, some participants reported not having an advocacy experience due to the COVID‐19 pandemic. Implications for research and practice are discussed. [ABSTRACT FROM AUTHOR]

The transition from adolescence to adulthood is difficult for individuals with autism spectrum disorder (ASD) and their families because they must learn to navigate the complex adult disability service delivery system. For Latinx (vs. White) families of youth with ASD, this period is especially difficult because of the systemic barriers (e.g., language and cultural differences) they face when accessing services. To support Latinx families, effective and culturally responsive supports (e.g. culturally tailored programs) are critical. To this end, the purpose of this study is to describe the cultural adaptation of a transition planning program (i.e., ASSIST) for Latinx families of youth with ASD. First, we culturally adapted the curriculum using the Ecological Validity Framework (Bernal et al., 1995) and the Cultural Sensitivity (CS) model (Resnicow et al., 1999). Then, we presented the culturally adapted curriculum to eight Mexican–American caregivers of youth with ASD. Specifically, we conducted three individual interviews with each participant (N = 24 interviews altogether) to examine their perceptions of the six sessions of the culturally adapted curriculum. Based on their feedback, changes were made to the curriculum. Overall, participants reported positive perceptions of the culturally adapted curriculum, but suggested the following recommendations: include information related to mixed‐status families, add information about guardianship, and use the translation technique of borrowing for specific terms. Based on the findings, implications for research and practice are discussed. [ABSTRACT FROM AUTHOR]

Families of autistic youth often support their children’s transition from adolescence to adulthood. During this time, families learn to navigate the complex shift from school-based to adult disability services. For Latinx (vs non-Latinx White) families of autistic youth, transition is especially difficult because of the systemic barriers (e.g. language) Latinx families face when accessing services. Unfortunately, few interventions aim to improve the transition among Latinx families of autistic transition-aged youth. This study examines the effectiveness, feasibility, and acceptability of the ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services) program, a six-session program for Latinx families of autistic youth, with respect to increasing: school-based transition planning and adult disability services knowledge, empowerment, and advocacy. Twenty-nine participants were included in this single-group, intervention study. After completing the program, participants demonstrated significantly improved: knowledge of school-based transition planning and adult disability services, advocacy, and empowerment. In addition, participants were highly satisfied with the program, based on the formative and summative evaluations and individual interviews. Implications for research and practice are discussed.To support Latinx families of autistic youth navigate school-based transition services and adult disability services, we provided a family advocacy program entitled, ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). The ASISTIR program consisted of six, two-hour sessions and included the following topics: school-based transition planning, person-centered planning, Supplemental Security Income, Vocational Rehabilitation, and Home and Community-Based Medicaid Waiver. Twenty-nine Latinx family members completed the cohort-based ASISTIR program. After participating family members demonstrated increased knowledge of school-based transition planning and adult disability services. Participants also demonstrated increased empowerment and advocacy. [ABSTRACT FROM AUTHOR]

Although parents of individuals with multiple disabilities have spearheaded legislation for students with disabilities, little is known about their legislative advocacy experiences with respect to adult disability policy and, relatedly, adult disability services. In this pilot study, we examined the perspectives and experiences of nine parents of youth with multiple disabilities with respect to legislative advocacy via two focus groups. Most participants had negative perceptions of their: legislators, adult disability policies, and, relatedly, adult disability services. Many participants suggested changes to increase the flexibility of Medicaid Home and Community Based Services. Directions for future research and practice are discussed. [ABSTRACT FROM AUTHOR]

Parents of children with intellectual and developmental disabilities experience a high degree of stress due to child (e.g., age and type of disability) and parent (e.g., self-mastery and optimism) characteristics. While research has demonstrated a link between parent and child characteristics and parent stress, less is known about the contribution to parent stress of school-related characteristics. The lack of focus on school characteristics is striking, given that many parents of children with intellectual and developmental disabilities struggle to access school services. To bridge this gap, our study identified child, parent, and school correlates of parent stress among 58 parents of children with intellectual and developmental disabilities. Results highlighted a negative correlation between stress and school characteristics, specifically: the quality of the family–school partnership; and family empowerment. Implications for research into parent stress and ways to reduce it are discussed. [ABSTRACT FROM AUTHOR]