Suchergebnisse

We invite you to read this Exchange focusing on the need to have more coherence and consistency in terminology/descriptions and in anticipated outcomes related to self-determination funding. We also invite you to contribute to a national dialogue to seek the coherence and consistency for which the article advocates. You can join the online discussion by visiting the Beach Center website ( www.beachcenter.org ) and looking on the home page for a link to the discussion board or you may link to the discussion board through TASH.org . Please join in!

The purpose of the study was 2-fold: (a) to explore the perceptions of individuals with cognitive disabilities and/ or autism regarding barriers and solutions they have experienced related to problem behavior, and (b) to elicit suggestions on areas viewed as most helpful in increasing quality of life while reducing or eliminating problem behavior. A qualitative method of inquiry using focus groups and individual interviews was used. Several themes emerged from the focus groups, including the difficulties participants experienced with communication; participants' need for personal decision making and privacy; and the importance of recreation, employment, selection of living situations, and relationships with friends and family members. The article indicates the importance of listening carefully to individuals with disabilities as a first step in improving the quality of their lives.

The rapid increase of culturally and linguistically diverse populations in the United States has important implications for service delivery. Addressing the needs of individuals transitioning from adolescence to adulthood and their families requires that outcomes of service recognize the cultural differences of people with disabilities. The Hispanic population is one of the fastest growing of the culturally and linguistically diverse populations in the United States. To provide effective support services, a clearer understanding is needed of the perspectives of Hispanic parents of youth/young adults with disabilities concerning their hopes and expectations for their child's future. To address this issue, focus group interviews were conducted with 38 Hispanic parents of youth/young adults with developmental disabilities. The findings suggest that Hispanic parents have a diversity of hopes and expectations concerning future living, employment, and free-time options for their children with disabilities. Key recommendations focus on the implications for education and human service systems as well as directions for future research.

The purpose of this exploratory study was to investigate the perspectives of 10 Korean American parents of children with disabilities about their partnerships with professionals with whom they work to meet the needs of their children and families. In-depth interviews were used for data collection and the constant comparative method was used to analyze the transcripts. Findings are discussed in terms of four themes that emerged from the analysis: Cultural and linguistic factors; a lack of prerequisites including connection, information, and advocacy; interpersonal factors such as strengths based perspective, professional expertise, commitment, caring, respect, and trustworthiness; and structural factors such as financial benefits, flexibility, turnover rate, and caseload. Finally, implications for practices to facilitate partnerships with Korean American parents and suggestions for future research are provided.

We discuss a participatory action research (PAR) approach to conducting family research. We conceptualize participatory action research as a collaborative process among researchers and stakeholders throughout the entire research sequence. Based on our five years of implementing PAR, we describe potential PAR advantages and challenges that need to be documented in future research. We propose a model of PAR implementation levels including the options of family members as research leaders and researchers as ongoing advisors, researchers and family members as coresearchers, and researchers as leaders, and family members as ongoing advisors. Finally, we discuss key implementation issues (i.e., defining stakeholders to include in the PAR process, maximizing benefits and minimizing drawbacks of diverse expertise, and addressing logistical considerations) with suggestions for effectively addressing them.

This study documented the process of developing and validating the Family Needs Assessment (FNA), a seven-factor 73-item measure developed for research and practice, using a sample of Taiwanese families. In developing the FNA, the research team identified a theoretical basis for family needs, used literature and qualitative results in generating items, ensured culturally and linguistically accurate translation of the measure, and revised the measure based on results from pilot tests and cognitive interviews. Although a confirmatory factor analysis is necessary to support final validity, results from this study provide a foundation for understanding Taiwanese family needs. According to the results, the domains with highest needs are Hope (i.e., anticipating and achieving positive outcomes) and Disability-Related Services (i.e., getting services and teaching the child with disabilities). Findings from this study indicate that the FNA, developed as a comprehensive, contemporary, accessible, and culturally appropriate tool, can contribute to the disability-related field in research and practice.

This article is concerned with parental facilitation of friendships between children with a disability and peers without a disability. Previous research on typical children has pointed out that parent facilitation has enabled them to establish a more active social life. We use Schaffner and Buswell's facilitation framework (i.e., finding opportunities, making interpretations, and making accommodations) to organize the grounded strategies used by four Hispanic families, all of whom have a son or daughter with a disability who is experiencing a successful friendship with a peer without a disability. Data collection involved 13 semistructured group and individual interviews, with 31 respondents, including parents, children/youth with and without disabilities, teachers, and other family members. Evidence from these interviews shows that the selected families, particularly mothers, have actively facilitated friendships most frequently by finding opportunities (which always involved some level of interpretation and accommodation). They also generally facilitated friendships by exposing their children to a wide range of potential friends, rather than prioritizing a relationship with a specific person. Of the parents of children without a disability, two mothers, who were also service providers for the individuals with disabilities, specifically facilitated a friendship between the individual and their own son or daughter. The discussion highlights key issues for future research.

AbstractFamily support consists of formal (i.e., provided by professionals) and informal (i.e., provided by family and friends) assistance that responds to families' emotional, physical, material/instrumental, and informational needs and is intended to enhance the quality of life of the family member with a disability and the family unit. The authors used a case study approach to examine a voluntary self‐help association to answer the questions: (1) what aspects of local self‐help entity provide effective and meaningful support to families who have a member with intellectual and developmental disability? and (2) what makes this support effective and meaningful? This study entailed a secondary analysis of data (interviews, observations, documents) collected over a 7‐month period in Kinshasa, DRC, to describe and examine a DRC‐based local voluntary self‐help association for family members of people with intellectual and/or developmental disabilities. The self‐help association examined provides emotional, physical, material/instrumental, and informational support to local families. Key reasons for the association's success include that it is grounded in local realities and led by charismatic, multidisciplinary, committed leaders. Key challenges of the association relate to a lack of sustainable funding and limited scope of impact outside of Kinshasa. The authors conclude that families themselves are often the first creators and providers of family support in conflict and postconflict contexts, where state priorities for family support of carers of persons with disabilities are often low or nonexistent. This case provides empirical evidence that families are currently self‐organizing to meet disability support needs in Kinshasa. As developing nations such as the DRC begin to structure more formal state programs for family support, they would be wise to partner with or formally engage existing experienced family associations to provide meaningful and effective disability‐related support.

This study examined family quality of life (FQOL) of Turkish families who have children with intellectual disabilities (ID) and autism. To research the perceptions of FQOL and relevant predictive relationships, data were gathered from 3,009 families who have children with ID and autism. The data were collected by using a Socio-demographic Family Information Form, Beach Center Family Quality of Life Scale, and the Family Support Scale. The FQOL and subdomain perceptions of families who have children with ID and autism were slightly above a moderate level; the highest perceptions were in the Family Interaction domain, and the lowest perceptions were in the Physical/Material Well-Being domain. We computed significant positive correlations between overall FQOL perception and family social support domains as well as between overall FQOL perception and sociodemographic variables. In the prediction of overall FQOL perception, the variable that mostly explained total variance was emotional support. For the covariates of care support, household/income, information support, socioeconomic status, age of child, type of disability, and affiliation support, the ability to predict FQOL was weak. Conversely, age of mothers, employment status of mothers, and material support domain were not important predictors in FQOL.