It takes a sister: sisterhood and Black womanhood in families of people with intellectual and developmental disabilities

This study explores the sibling relationships of Black women with sisters who have intellectual and developmental disabilities in the southeast United States including Georgia, South Carolina, Florida, and Louisiana. The researchers used disability/critical race theory to understand the perceptions and stigmas associated with disability relating to social, cultural, and psychological structures within sibling relationships. Results were captured in four themes: cultural perceptions of family and extended kin; sibling relationships; beliefs about the self as a sister; and siblings’ identities. The findings from this study will contribute to research in disability studies by providing a better understanding of the intersections of identities and the familial experiences of diverse families.     

Post-adoption needs of families adopting children with developmental disabilities

The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracial adoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.     

Parental reactions to developmental disabilities in Chinese American families

Families of Chinese American children with mental retardation and developmental disabilities were interviewed regarding their attitudes and coping experiences. Chinese American parents, like other American parents, reacted to the crisis with intense feelings and needs. The parents revealed a lack of knowledge and understanding of the diagnosis. Chinese belief systems about health and illness were present in the parents' concepts of causation and treatment.Hunter College School of Social Work.     

Facilitating self-determination in adolescents with intellectual disabilities: a curriculum

Taking an active part and responsibilities in one's own life is not always easy, particularly at adolescence, which is a very important period in which people progressively find their identity and life project. This article describes the social validation analyses of a Belgian self-determination curriculum that was adapted from a French-Canadian curriculum. It was done with the participation of adolescents with intellectual disabilities, teachers, and experts from the field. Overall, results indicate a satisfying to very satisfying appreciation of the social utility of the training manual. The findings also highlighted that the curriculum actually supports the conceptual framework of self-determination.     

Evidence-based practices in the field of intellectual and developmental disabilities: an international consensus approach

As evidence-based practices become increasingly advocated for and used in the human services field it is important to integrate issues raised by three perspectives on evidence: empirical-analytical, phenomenological-existential, and post-structural. This article presents and discusses an evidence-based conceptual model and measurement framework that integrates these three perspectives and results in: multiple perspectives on evidence-based practices that involve the individual, the organization, and society; and multiple interpretation guidelines related to the quality, robustness, and relevance of the evidence. The article concludes with a discussion of five issues that need to be addressed in the future conceptualization, measurement and application of evidence-based practices. These five are the need to: expand the concepts of internal and external validity, approach evidence-based practices from a systems perspective, integrate the various perspectives regarding evidence-based practices, develop and evaluate evidence-based practices within the context of best practices, and develop a set of guidelines related to the translation of evidence into practice.     

Family support: A review of the literature on families of adolescents with disabilities

ABSTRACT

For all youth, adolescence is a time of great change, marked by multiple transitions. For those with disabilities, these transitions can be especially challenging for the youth and their families. Although families of adolescents with disabilities often require support, it is unclear what types of assistance are most helpful. To understand the responsibilities of and, correspondingly, supports needed for parents and siblings, the authors conducted a comprehensive literature review. Specifically, the authors examined the literature to identify the supports that families provide to their adolescent relatives with disabilities, the impacts of caring for an adolescent relative with a disability, and the assistance that families receive. The authors conclude by discussing implications for future research about family support.     

Using video vignettes in research and program evaluation for people with intellectual and developmental disabilities: A case study of the Leadership for Empowerment and Abuse Prevention (LEAP) project

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.     

Adoption of children with developmental disabilities.

United Methodist Family Services of Virginia placed 41 developmentally disabled children in adoptive homes between August 1985 and June 1988, representing a range of chronic emotional, intellectual, and physical disabilities. This article describes the need for specialized adoption programs for children with developmental disabilities and the methods used in placing these children. The obstacles to adoption of children with developmental disabilities are also discussed.     

Characterizing the systems of support for families of children with disabilities: A review of the literature

ABSTRACT

During early childhood, children require major support that is tailored toward their specific needs. For children with disabilities, families play a crucial part in providing the needed services. However, families often lack the knowledge, resources, and skills that would help them in overcoming challenges that arise while raising a child with disability. Although much research has focused on defining the needs of families with children with disabilities and the impact of disability on the family system, many questions remain. A comprehensive perspective is needed to identify the types of support families provide to the child with a disability, the impact of providing that support on family members, the support systems that are available to families, and the impact of support on society. This review consolidates the empirical research to date on family support during early childhood and outlines areas of research that need further exploration.     

Violence towards caregivers of persons with developmental disabilities

OBJECTIVE: Violent and disruptive acts committed by persons with developmental disabilities are a potential work environment problem for caregivers. This study developed and tested an instrument for describing and analyzing violence among persons with developmental disabilities. METHODS: Personnel from four units of one facility recorded daily on a simple form all violent and disruptive acts occurring in a limited range of situations. RESULTS: Acts of violence were associated with a small minority of individuals, but grossly underreported and unrecognized in formal reporting systems. None of the nearly 3000 incidents recorded during the six-week study required sick leave. Violent and disruptive acts occurred most often when an individual was requested to do something he or she did not want to do, when the individual was denied the opportunity to do something they did want to do and when waiting or under-stimulated. Personnel used the data in discussing countermeasures that could be integrated with the care and treatment of the individual. CONCLUSION: Hitting, kicking, pinching etc. of personnel are a work environment problem due to their high frequency and effects upon employee morale. The instrument and procedures can be used to reduce incidents of violence, which would improve the working environment of employees and assist persons with developmental disabilities as they move from institutional environments.     

Self- and caregiver-reported experiences of young adults with developmental disabilities

The purpose of this study was to describe the experiences of young adults with developmental disabilities (DD) who were living in community settings with the aid of government-supported services. Six male and 10 female volunteer subjects (mean age = 24 years) were interviewed and the narrative data were analyzed revealing themes in six categories: (1) Home Life, (2) Relationships, (3) Health and Health Care, (4) Personal Growth and Accomplishments, (5) Occupation, and (6) Transportation. Subjects' most positive experiences were associated with integrated, comprehensive and timely services delivered by knowledgeable and sensitive service providers. Strong parental advocacy facilitated these features. Additionally, experiences were most positive when daily activities occurred within the sphere of either family or the disability community, as opposed to the broader community. Research is suggested to further understand the dynamics of integration in the broader community and to devise strategies to successfully facilitate this integration.     

Children with developmental disabilities in the child welfare system: a national survey

A survey of state agencies responsible for developmental disabilities/mental retardation and child welfare investigated the coordination of services for children with developmental disabilities. Recommendations are offered with regard to further research and model program development.     

Person centered planning in a transition program for Bronx youth with disabilities

The City University of New York conducted its Youth Transition Demonstration Project from 2003 to 2010. This federally-funded research and demonstration project was designed to help transition-age youth with disabilities receiving Supplemental Security Income (SSI) achieve maximum self-sufficiency. More than 400 youth living in the high-poverty county of Bronx, NY were enrolled in a treatment group and offered a series of interventions, including Person-Centered Planning (PCP). Quantitative and qualitative research methods show that this process was linked to improved educational and employment outcomes for youth. Sixty-five percent of youth enrolled in the project participated in at least one PCP session. Youth from lower-income families were less likely to participate in PCP, as were youth with mood disorders. Youth who did participate in PCP were more likely to hold at least one paid job. Youth focused on relationships, personal strengths and goals during these sessions, which proved an important part of their transition process. Recommendations for educators, service-providers and policy-makers are included for professionals seeking to implement collaborative transition services for youth and their families.     

Home for now: A mixed-methods evaluation of a short-term housing support program for homeless families

The use of short-term rental subsidy vouchers offers a new approach to addressing the housing needs of families facing homelessness. In Massachusetts, the Family Home pilot program placed homeless families in housing instead of shelter, providing two years of rental subsidy plus support services with the goal of enabling families to maintain market rate housing. This mixed-method case study complements staff and participant interview data with participant survey and administrative data to evaluate the implementation and short-term outcomes of Family Home in one region. Data point to improved family well-being in housing but also persistent barriers to achieving longer-term housing and economic stability. Of the families who had exited the program at the end of the study, one quarter were able to retain their housing at market rate, only 9% returned to shelter, and one in five moved in with families/friends. Lack of affordable housing in a high rental cost region and jobs that pay living wages were among the major reasons that families struggled to maintain housing. This research points to the need for integrating supportive services from the program's start, including targeted workforce development, to plan for the end of the short-term rental subsidy.     

Belonging: women living with intellectual disabilities and experiences of domestic violence

Women with an intellectual disability are under-represented in domestic violence research, yet they are one of the most vulnerable groups who are at risk of violence and abuse. This article aims to contribute to the domestic violence field by reporting on a narrative dialogic performative study, which utilised a feminist poststructural perspective to explore significant relationships and the concept of belonging in the lives of women with a mild intellectual disability. Four in-depth narrative interviews were conducted. The study found that the women shared similar stories of devaluation and rejection in childhood and hence the women’s search for belonging contributed to their vulnerability to exploitation and abuse in domestic violence relationships. The paper argues that gendered discourses and constructions of intellectual disability regulate domestic violence as a personal problem or way of life for women with intellectual disabilities.