Nina Zuna

Theorizing About Family Quality of Life

In this chapter we present a unified theory of family quality of life (FQOL) for families of children with intellectual and other disabilities. We begin with a review of the definitional and explanatory components of FQOL and the variables forwarded in the family quality of life (FQOL) literature. We depict FQOL as an interactive process in which individual family member demographics, characteristics, and beliefs interact with family-unit dynamics and characteristics within the context of individual and family-level supports, services, and practices. This interactive inner framework of the model is further impacted by federal, state, and local systems, policies, and programs. Using the basic building blocks of theory and empirical data from the family quality of literature, we illustrate how these unique components combine to produce an explanation of FQOL. We end with a working theoretical model of FQOL which serves as a guide for researchers to generate multiple testable theoretical statements.

Confirmatory Factor Analysis of a Family Quality of Life Scale for Families of Kindergarten Children Without Disabilities

Recently, within the field of special education, attention has been accorded to the conceptualization and measurement of family outcomes. The Family Quality of Life (FQOL) Scale is an instrument that can be used to measure family outcomes for families who have children with disabilities, and it has been demonstrated to have psychometric validity. To expand the usability of the FQOL Scale, the authors tested its measurement properties for families of kindergarten children without disabilities. Results from this new population of interest indicated adequate fit of the sample data to the theoretical model. Policy and program implications are discussed.

Anchoring Schoolwide Positive Behavior Support in Structural School Reform

Schoolwide positive behavior support (SWPBS) exemplifies a longitudinal research program originating in the fields of special education and school psychology that has produced an extensive national database encompassing an evidence-based set of practices applicable to general education as well as special education students including those with severe disabilities. Schoolwide applications of evidence-based practices, however, are at some risk of falling victim to the ongoing bifurcation of education into the general and special education parallel and often noninteractive, professional systems of instruction. One potential solution to bifurcated practice is to embed (or contextualize) SWPBS in a broader, universal school reform agenda that coordinates and evaluates all educational intervention services and supports for the benefit of all students. A structural school reform process called the Schoolwide Applications Model (SAM) is described, which includes SWPBS as 1 of 15 critical features. Results from a 3-year, ongoing research project in a low-income, multicultural, urban school district in Northern California suggests that SWPBS, with its three levels of student support, guided by teams of general as well as special educators, can be an important contributor to academic as well as social achievement among students with and without disabilities and, as grounded within systematic school reform, can help to mitigate against the bifurcation of general and special education practices.

The Quantitative Measurement of Family Quality of Life: A Review of Available Instruments.

BACKGROUND Family quality of life (FQOL) has emerged as an important outcome of service delivery for individuals with disabilities and their families. The purpose of this review was to explore the disparity of scale development approaches between families with children with disabilities and families from other populations and identify strengths to serve as a source of recommendations to improve the measurements of FQOL in the disability field. METHOD We conducted a keyword search of 25 databases. Sixteen measurement tools on FQOL, family well-being and family satisfaction currently used in the disability field, healthcare field and general family studies published in journals from 1980 to 2009 were included in the analysis. RESULTS Three themes emerged from the detailed analysis and comparisons of the instruments: (1) description of the primary purpose and theoretical basis; (2) identification of the tools respondents, domains, response formats and scoring strategies to assess family systems; and (3) summarisation of available psychometric information. CONCLUSIONS As family researchers continue their mission to conceptualise and theorise about FQOL, they should also promote the refinement of FQOL measurements and consider the implications from family instruments used in the healthcare and general family fields from the following aspects: (1) domains of FQOL; (2) units of analysis; (3) response format; (4) scoring choice; and (5) psychometric evaluation.

Using Positive Behavioral Support to Manage Avoidance of Academic Tasks

expressed by teachers and administrators is how to manage behavioral problems in the classroom (Langdon, 1999). Behavior that disrupts instruction is problematic for teachers and students, in part, because we have known for quite some time that the amount of time students engage actively in academic tasks is positively correlated to how much they learn (Black, 2004). Functional assessment and positive behavioral support (PBS) are two management approaches that are extensions of applied behavior analysis (Repp & Horner, 1999). Unlike some classroom management practices that rely heavily on aversive consequences, these approaches use more proactive techniques to manage challenging behavior and increase students’ active engagement in learning. These approaches

Epilepsy in Children with ASD: An Overview of Evaluation Procedures, Child Characteristics and Treatment Options

Abstract The rates of epilepsy among children with autism spectrum disorders (ASD) are higher than that of the general population. The exact prevalence and aetiology of the comorbidity of autism and epilepsy are not well understood; however, the connection is well-documented. This common comorbidity makes the treatment of epilepsy increasingly complex for children with ASD. The purpose of this article is to provide an overview of the relevant literature for individuals with epilepsy with a particular focus on individuals with both ASD and epilepsy according to the following framework: (a) evaluation procedures, (b) child characteristics and outcomes and (c) treatment options. Thirty articles met specific inclusion criteria. Several treatment options for epilepsy in children with ASD were uncovered, including medications, vagus nerve stimulation and surgery. Still, more research is needed to identify comprehensive treatments that have been empirically proven to be successful for children with ASD.

Parental perceptions and satisfaction with family services in families of children with autism spectrum disorder and other developmental disabilities

ABSTRACT Background This paper reports results from a study examining disability-related services at the family level. Method We used descriptive statistics to examine (a) the types of disability-related family services families used, (b) how well family services met their needs, (c) the types of family services needed but not received, and (d) families’ perceptions of their knowledge of disability-related family services. Results Families were mostly satisfied with the services they received; however, about 25% of the sample indicated that a few family services, such as respite, sibling support groups, and parent support groups, were needed but not received. Families were also slightly less satisfied with their knowledge of family services as compared to their ability to request services. Conclusions Families identified specific services to meet the needs of all of their family members; however, their family support needs are not always being adequately addressed by current programs. Initial assessments should be used to match family services to family needs, and follow-up consultations would help to ensure that the services received result in improved family quality of life.