Exploring the Perspectives of Parents of Individuals with Autism from Low-Resourced Communities to Inform Family Navigator Programs.

Family navigator programs (i.e., programs to train family navigators) are becoming increasingly common among families of children with autism. Family navigators (i.e., individuals who help families access evaluations and/or services) may be parents of children with autism themselves or health professionals. Extant research has shown that family navigators can help families receive timely diagnostic evaluations and initial services. Yet, the development of family navigator programs is unclear; by exploring the input of families of children with autism, such programs can be responsive to family needs. In this study, we extend the extent literature by exploring the lived experiences of 12 parents of autistic children from low-resourced communities to inform the development of a family navigator program. Findings demonstrated that navigator programs need to prepare navigators to address barriers such as limited knowledge and difficulty accepting an autism diagnosis. Navigator programs should teach navigators to use strategies with families including educating families about services and connecting families with peer support. Program content should reflect direct services, government services, and advocacy strategies. Notably, for true improvements to service access for all autistic children, systemic changes are also needed in the service delivery systems. Implications are discussed.

Exploring patterns between school perceptions, child behavior, and maternal well-being among Latina mothers of children with autism spectrum disorder (ASD).

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.

Transition Planning: Knowledge and Preferences of Latinx Families of Youth With Intellectual and Developmental Disabilities.

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.

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.

Exploring Patterns of Advocacy and Well-Being of Parents of Children With Intellectual and Developmental Disabilities.

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.

Examining the relation between empowerment and civic engagement among parents of individuals with intellectual and developmental disabilities.

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.

A Study of the Families Included in Receiving Better Special Education Services (FIRME) Project for Latinx Families of Children with Autism and Developmental Disabilities.

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.

Exploring the nature and correlates of caregiving among parents of adults with intellectual and developmental disabilities.

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.