Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver.

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.

The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress.

Home and Community-Based Services (HCBS) Waivers provide support and services to families with a child/youth with autism spectrum disorder (ASD). Research indicates HCBS Waivers are positively related to family quality of life (FQoL) and Child Progress. This study replicated and expanded prior research using propensity score matching of 460 families. Results support prior findings that HCBS waivers have a positive impact on FQoL and aspects of child progress. This study also found that having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthened both the child and family impacts of the Waiver services. In addition, the study provides preliminary evidence for psychometric properties of a quick and inexpensive parent-report of ASD severity.

Foundations for Self-Determination in Early Childhood: Preliminary Preschool Study.

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.

Family perceptions of the impacts of a home and community based services autism waiver: Making family life possible.

BACKGROUND: An important mechanism that provides support and services for families with a child/youth with autism spectrum disorder is the home- and community-based services (HCBS) Waiver authorized by Section 1915(c) of the Social Security Act or Medicaid. METHODS: This study used qualitative research methods to explore parent perspectives about the impact of HCBS Waiver services on the child/youth with autism and their family. In-depth interviews focused on aspects of the programme they valued, identification of barriers and general issues they experienced. RESULTS: Results of the qualitative study indicated that improved outcomes could be explained by providers of services who were well-trained, flexible and allowed parents' opportunities for choice regarding provision of services to meet child/youth and family needs. CONCLUSION: The findings of this study provide guideposts for further research about factors that contribute to satisfaction of families receiving waiver services for quality of life and child progress.

Impact of supports and partnership on family quality of life.

BACKGROUND: In recent decades, Family Quality of Life (FQOL) has emerged as a decisive construct, both to improve the living conditions of the families of people with disabilities and to assess the results on the services and supports that they receive. The aim of this research is to determine the perception of the families regarding their support needs, the quality of their partnerships with professionals, and their FQOL and then identify to what extent the supports of early childhood intervention centers have a positive impact on the families' FQOL while exploring whether the family-professional partnership has become a fundamental intervening factor of FQOL. METHOD: The participants were 202 families with children aged 0-6 with intellectual and developmental disabilities. We used the structural equation model to analyze the influence that the adequacy of the supports and the partnerships exerted on FQOL. RESULTS: The results indicate that the families have language and speech support needs for their children and information needs for themselves, and that they are mostly satisfied with their partnerships with the professionals and their FQOL. Our results also indicate that their degree of satisfaction with the support was a good predictor of FQOL and their ratings of partnership quality was a key factor interceding on this effect. CONCLUSIONS: This study provides professionals and public institutions with guidance when designing plans to improve early childhood intervention centers so the quality of life of these families and the progress of children with disabilities living in Spain become progressively stronger.

Confirmatory Factor Analysis of a Family Quality of Life Scale for Taiwanese Families of Children With Intellectual Disability/Developmental Delay.

The Beach Center Family Quality of Life Scale is an internationally validated instrument for measuring family outcomes. To revise the scale for better alignment with the Family Quality of Life theory, the authors excluded non-outcome items in this revision. In this study, we examined reliability and validity of the revised scale (i.e., the FQoL Scale-21) and its scores for Taiwanese families of children and youth with intellectual disability and developmental delay (age 0-18). Results from 400 Taiwanese respondents suggested that the FQoL Scale-21 has the potential to be used as an indicator of positive outcomes in intervention evaluation, policy making, and service delivery.

Preventing health problems that disrupt community living: A health promotion needs assessment.

People with physical disabilities experience health disparities and poor health outcomes that endanger community living and participation, and sometimes contribute to institutionalization. Centers for Independent Living (CILs) provide vital services to assist consumers with disabilities in achieving and maintaining community living; these organizations could be trusted sources in providing targeted health information. As first steps in devising a Health Promotion Assistance Tool for CIL staff to use with consumers, this project conducted a Needs Assessment study to collect feedback on what information would be most useful. First, researchers interviewed key informants from a sample of CIL staff members to gain input for a survey on the content of the proposed tool. Then, they disseminated the survey by e-mail to 426 CILs listed in a national data bank, and received responses from one or more staff members from 93 CILs. CIL staff reported that their consumers experienced a variety of chronic conditions (e.g., diabetes, high blood pressure) in addition to their physical disability, and that they also experienced secondary health conditions such as chronic pain and depression. CIL staff also reported that they believed their consumers were in need of supports to enable them to engage in preventive health care. We discuss implications for these findings to our further research.

A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program.

State-specific 1915(c) Medicaid Home and Community-Based Services waiver programs have become central in the provision of services specifically tailored to children with autism spectrum disorders (ASD). Using propensity score matching, 130 families receiving waiver services for a child with ASD were matched with and compared to 130 families waiting on the registry (i.e., control group). Results indicate that participants in the waiver group reported more improvement in independent living skills and family quality of life over the last year compared to those on the registry. More frequent intensive individual support services and therapeutic integration were statistically predictive of improvement in a variety of domains. The results suggest that the waiver program may be promising for improving child and family functioning.

A systematic scoping review of measures of participation in disability and rehabilitation research: a preliminary report of findings.

PURPOSE/OBJECTIVE: The concept of participation is emerging as a gold-standard of outcome measurement in disability and rehabilitation. We aimed to assess the status of methods to measure this new concept. METHOD/DESIGN: We conducted a scoping review and a content analysis to assess the literature on participation. RESULTS: We identified 586 articles addressing participation. Seventy-two articles passed all exclusion criteria. Twenty-four articles cited the International Classification of Function as their conceptual foundation. Most studies included individuals with a broad range of impairments (cross disability). Most instruments relied on self-report in a cross-sectional design. We noted three levels of measurement (static, interactional, and dynamic). Few studies reported collecting data on the environment along with participation. Subjective aspects of participation emerged as an important consideration but few articles reported measuring it. CONCLUSIONS: The concept of participation represents more than a "shift from negative to more positive language." It represents a transformational concept that requires new, dynamic measures collected in context.

Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities.

The purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family research focuses on internal family characteristics as contrasted to external family support. The reviewers collected 28 articles using the terms well-being, adaptation, family functioning, or family quality of life in the title. Results of our analyses are presented as a comparison between well-being, adaptation, and family functioning articles in one group and family quality of life articles in a second group. Both groups lacked explicit conceptual definitions, theory, and random/representative samples. The articles placed an undue emphasis on maternal participation, and tended to report a single family member score as representative of the whole family. Two major differences between the groups was a tendency for family quality of life studies to be grounded in conceptual frameworks and focus on new instrument development. Recommendations for future research directions are included.