Shana R. Cohen

Receiving or believing in family support? Contributors to the life quality of Latino and non‐Latino families of children with intellectual disability

BACKGROUND Previous studies have identified the role of family support in mitigating the stress of parents caring for a child with intellectual disability. Less is known about families whose members are willing but unable to support each other because of geographical, structural and economic barriers. Our study examined the contribution to family quality of life (FQL) of family support beliefs, actual assistance from family members, as well as the moderating effects of ethnicity and household income. METHOD We conducted telephone interviews with 84 Latino and 61 non-Latino mothers. RESULTS Mothers who received more emotional support from partners and other family members reported a higher FQL, controlling for family characteristics. Familism beliefs were also associated with FQL, particularly for Latino mothers. Income was not a significant moderator. CONCLUSIONS These findings suggest that some predictors of FQL are partially moderated by ethnicity, while others may be powerful across diverse communities.

Whose Job Is It? Everyday Routines and Quality of Life in Latino and Non-Latino Families of Children With Intellectual Disabilities

Previous studies indicate that families construct daily routines that enable the household to function smoothly and promote family quality of life. However, we know little about how activities are distributed between parents caring for a child with an intellectual disability (ID), particularly in Latino families. To address this gap, we interviewed 145 Latino and non-Latino mothers of children with ID about the division of daily activities. Mothers engaged in far more activities than did their spouses/partners, particularly in lower income households. Cluster analysis was used to reveal patterns of activity distribution. Cluster membership was associated with family income but not ethnicity. Controlling for family income, mothers were more satisfied with their own lives and rated their families as having a better quality of life when activities were more equally distributed, particularly when spouses/partners were knowledgeable about their child’s disability. Implications for increasing paternal engagement are discussed.

Amor and Social Stigma: ASD Beliefs among Immigrant Mexican Parents.

This study examined cultural beliefs about ASD and its causes among Mexican-heritage families. In focus group interviews, we asked 25 immigrant parents of children with ASD to identify words they associated with ASD and its causes. Participants free-listed, ranked, and justified their responses. Mixed methods analyses utilized saliency scores to calculate responses. Deductive interview analyses justified participants’ responses. Salient responses for ASD perceptions included specific characteristics about the child (e.g., loving) and perceptions about lack of resources. Salient responses for ASD causes were vaccines, genetics, and a combination of genetics and environment. Inductive analyses revealed distinct beliefs about social stigma, child characteristics, factors supporting development, and parents’ emotional stress. Interpretations linked these beliefs to promising adaptations in diagnosis and treatment.

Culture, Stigma, and Intersectionality: Toward Equitable Parent-Practitioner Relationships in Early Childhood Special Education

Parental involvement in the selection and implementation of children’s educational services is one of the most important tenets of the Individuals with Disabilities Education Act. However, parental involvement may be less welcome and less effectively supported in families from non-dominant groups (i.e., those with lower social status as a result of their race, ethnicity, social class, or immigrant status) compared to those with more resources. In this chapter, we explore several important conceptual tools related to diversity and stigmatization that support families’ equitable access to special education services for their young children. After reviewing how culture has typically been defined in the field of early childhood special education (ECSE), we introduce the critical sociocultural perspective and describe its clear implications for more effective parent-practitioner relations. We subsequently explore the notions of individual and institutional stigma, and show how early childhood practitioners can identify stigmatizing experiences that children with disabilities and their parents may have encountered. We then address the experience of families who are stigmatized for additional reasons other than the disability status of a family member, showing how children and families are located at the intersection of overlapping social identities rather than situated within a single homogenous racial, ethnic, or gender category. We conclude the chapter with specific suggestions for service providers to assist them in addressing stigmatization of individuals with autism, particularly those who are members of non-dominant groups, in the hope of moving the field of ECSE closer to its promise of a free, appropriate, public education for all.