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.     

Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.     

How do adults with intellectual disabilities use Facebook?

Social networking sites have potential to support social relationships and self-determination of people with intellectual disabilities. However, to date, this issue has received little research attention. To help address this need, we conducted an online research survey to reach adults with intellectual disabilities who use Facebook and to include their voices about their online experiences, challenges, and preferences. We used mixed methods for data collection and analysis. Results from 58 respondents indicated that they use Facebook much as non-disabled users do to connect with family members and real-world friends. At the same time, the respondents reported challenges such as privacy setting and literacy demands. We discuss these findings and how to make social networking sites more accessible for users with intellectual disabilities.     

‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Adult social care services in the United Kingdom have undergone a period of transformation over recent years, characterised by a drive towards personalised care. Concurrently, social care budgets have been significantly reduced. This study aimed to explore the daily living experiences of adults with mild/moderate intellectual disabilities, who are at risk of no longer meeting eligibility criteria for statutory support. Focus group discussions, which included both people with intellectual disabilities and support workers, were analysed thematically. Two broad themes are presented: independence and agency; and social capital and well-being. While some participants echoed ideas central to the personalisation narrative, a number of contextual barriers to achieving greater independence and agency were discussed. Moreover, greater independence was not a desired goal for all participants. The findings highlight the potential mismatch between personalised social care, as delivered within significant budget constraints, and the needs of adults with intellectual disabilities.     

Examining outpatient health care utilization among adults with severe or profound intellectual disabilities living in an urban setting: a brief snap shot

The present study examined the health status and outpatient health care utilization among 52 adults with severe or profound intellectual disabilities (IDs) living with their families or in group homes in New York City. Bivariate and regression analyses among demographic variables, medical conditions, health care utilization, and type of living situation were conducted. Findings indicate that demographic factors and health statuses were similar regardless of living situation, except for age and the presence of Down Syndrome, that is, younger people and people with Down Syndrome were more likely to live with family than in group homes. The results indicated that regardless of where they lived, individuals had high rates (70%) of overweight/obesity. The mean number of internal medicine, specialty medicine, nursing, and total clinic visits were significantly higher for those living in group homes compared to those living with their families. The findings and their implications are discussed with respect to social work policy and practice.     

Mental health service utilization and time to care: A comparison of children in traditional foster care and children in kinship care

Existing research indicates that children who are involved with the child welfare system and placed in various forms of out-of-home care experience emotional and behavioral problems. It is also suggested that children placed in kinship care are less likely to receive mental health services than children placed in non-kinship foster homes. This study sought to compare children in non-kinship foster homes to children in kinship care to determine their receipt of mental health services and the time it took for children in kinship care to receive mental health services compared to children in non-kinship foster homes. Using a Cox regression, researchers determined that children in kinship care had a 14% lower likelihood of receipt of mental health services compared to their counterparts in non-kinship foster placements.     

Becoming the mother of a child with disabilities: a systematic literature review

The transition to motherhood starts early in pregnancy and is completed when the mother feels competent in caring for the infant. Becoming the mother of a child with disabilities is demanding as their needs are complex. The aim of the review was to appraise completed qualitative and quantitative reports on the challenges of mothers of children with disabilities regarding their own transition to motherhood. A review of the literature was carried out through, first, a computerized search strategy to identify relevant studies from selected databases and, second, quality appraisal and thematic analysis of selected studies. The transition to motherhood of children with disabilities takes place in the inside world at home, the outside world external to home and the ‘going-between’ world of travelling between the two worlds. The mothers are challenged at home to integrate basic infant care with technical care of their children. In the outside world they often struggled to ensure that their children got the necessary professional care. Travelling between their homes and healthcare services posed many problems.     

Examining Outpatient Health Care Utilization Among Adults with Severe or Profound Intellectual Disabilities Living in an Urban Setting

Abstract

The present study examined the health status and outpatient health care utilization among 52 adults with severe or profound intellectual disabilities (IDs) living with their families or in group homes in New York City. Bivariate and regression analyses among demographic variables, medical conditions, health care utilization, and type of living situation were conducted. Findings indicate that demographic factors andhealth statuses were similar regardless of living situation, except for ageand the presence of Down Syndrome, that is, younger people and people with Down Syndrome were more likely to live with family than in group homes. The results indicated that regardless of where they lived, individuals had high rates (70%) of overweight/obesity. The mean number of internal medicine, specialty medicine, nursing, and total clinic visits were significantly higher for those living in group homes compared to those living with their families. The findings and their implications are discussed with respect to social work policy and practice.     

Contrasting perspectives of parents and service providers on respite care in Queensland,Australia

Abstract

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home.     

The relationship between child disability and living arrangement in child welfare

The influence of disabilities on placement outcomes was examined for 277 children who were removed from their biological parents due to substantiated maltreatment. Results indicated that children with a disability were less likely to reunify and more likely to reside in nonkin foster care two years later than typical children. Children with cognitive, emotional /behavioral, and physical disabilities were over four times more likely to be permanently living in nonkin foster care than to be reunified.     

From Refrigerator Mothers to Warrior‐Heroes: The Cultural Identity Transformation of Mothers Raising Children with Intellectual Disabilities

This article examines public performances of mothering children with intellectual disabilities through thematic discourse analysis of thirty‐three published memoirs. These data reveal presentations of self that, once consumed and interpreted by public interaction, emerge collectively as a “warrior‐hero” identity, a reformulated archetype in the social construction of a good mother. This archetype places a cultural expectation on mothers to do battle to attain resources and possible cures for their children, ultimately shifting the historical burden on mothers from causing the intellectual disabilities of their children to curing them. The article concludes with a discussion of how this hyperfocus on expert parenting has the potential to leave mothers of children with intellectual disabilities strained and subject to the pitfalls of systems of inequality.     

A rights-based conceptual framework for the social inclusion of children and young persons with an intellectual disability

There is a basic principle that all children and young persons with intellectual disabilities should be able to enjoy citizenship on an equal basis with others. This includes enjoying personal dignity and exercising choice, control and freedom in social, community and cultural life, in keeping with their individual lifestyle preferences and aspirations. There is a need for a stronger human rights narrative to achieve this. This article identifies a conceptual framework for a rights-based approach to the integration of children and young persons with disabilities. Seven components of such a framework are identified: citizenship and social inclusion; recognition; agency; voice; capabilities; equality; and self-realisation. This framework was developed as part of an Irish case study involving consultation with young persons with intellectual disabilities, their parents or guardians and professional staff delivering support services. The rights of children/young persons with intellectual disabilities are essentially those of children generally. While this principle may be obvious in many respects, its implementation presents significant challenges. The need for a transformative narrative and its components are outlined.     

Disentangling over-representation of parents with disabilities in the child welfare system: Exploring child maltreatment risk factors of parents with disabilities

The study explores the risk factors for child maltreatment and self-reported child maltreatment among a population-based sample of parents with disabilities. Drawing on a nationally-representative, population-based data file that oversampled people of color, income-adjusted odds ratio tests were conducted to establish population differences among parents with and without limitations in activities of daily living (ADLs). Results suggest that parents with disabilities were more likely to report many of the risk factors associated with child maltreatment than parents without disabilities, including witnessing interpersonal violence as a child; experiencing violence, neglect or a foster care stay as a child; mood or substance use disorders; and engaging in or receiving interpersonal violence as an adult. Before controlling for income, parents with disabilities had only a negligibly higher rate of engaging in violence against their children. After controlling for income, parents with disabilities were 2.5 times more likely to engage in violence against their children. Parents with disabilities who did engage in violence against their children had greater amounts of some of the child maltreatment risk factors in comparison to parents with disabilities who did not engage in violence, particularly their own childhood experiences of maltreatment, witnessing of interpersonal violence as a child, childhood stays in foster care, and experiences with interpersonal violence as an adult. Findings add to the understanding of the risk factors for child maltreatment that are related to the collateral effects of having a disability, and through the use of income-adjusted data, help disentangle why parents with disabilities are over-represented in the child welfare system. The findings highlight the need for the child welfare system to increase its disability competence in working with both children and parents with disabilities.     

Aggressive behaviors among Korean children in out-of-home care: The role of placement characteristics

Using data from the Korean Panel Study on Children in Out-of-Home Care, this study examined the impact of placement characteristics on aggressive behaviors among children in out-of-home care by placement type. The sample was divided into three groups based on placement type: institutional care (n = 118), group homes (n = 95), and foster care (n = 212). Results from hierarchical multiple regression analyses indicated that the length of stay in out-of-home care significantly influenced aggressive behaviors amongst children in institutional care, such that increased duration of out-of-home care decreased the level of aggressive behaviors. Perceptions of stigma/discrimination also significantly influenced aggressive behaviors displayed by children in institutional and foster care. Children with a higher perception of stigma/discrimination were more likely to exhibit severe aggressive behaviors than were their counterparts. On the other hand, placement characteristics had no significant influence on aggressive behaviors of children in group homes. The study findings suggest that children's mental health problems and disabilities should be considered during the placement procedure and interventions focusing on decreasing stigmatization should be developed and provided for children in out-of-home care.     

Treating the 'idiot' child in early 20th-century Ontario

The late 19th and early 20th centuries witnessed the widespread construction of institutions for individuals with intellectual disabilities. Consequently, most historical research into the history of intellectual disability has focused on medical interventions performed inside these quasi-medical institutions. Recently, however, there has been new interest in community options that existed at the same time and the way in which community care and formal institutions interacted. This paper explores these issues in the context of early 20th century Canada. It will demonstrate that families of 'idiot' children sought different types of treatments and care in order to remedy their child's behavioural difficulties and learning delays. In many cases, families resorted to applying for their child's admission to the then largest 'idiot' institution in Canada, the Orillia Asylum. However, these admissions often occurred after lengthy and often exhaustive attempts by families to find alternatives to the institution and, indeed, to formal medical treatment.     

Prevalence of children with disabilities in the child welfare system and out of home placement: An examination of administrative records

This article explores the prevalence and characteristics of children with disabilities within the child welfare system using administrative data from the State of Minnesota. This study finds that more than a fifth (22%) of children with substantiated maltreatment are labeled in administrative records as having a disability, and more than one quarter of children (27.9%) over age five. The most common type of disability among children with substantiated maltreatment was emotional disturbance, while other common disabilities included intellectual and developmental disabilities and learning disabilities. Using logistic regression, this study finds that children with substantiated maltreatment with disabilities were about two times more likely to be in out of home placement than children with substantiated maltreatment without disabilities.     

Health Care innovation and children in poverty: lived experiences of caregivers of children with disabilities in a medicaid-serving ACO

This paper reports the results of a qualitative study of caregivers of children with disabilities enrolled in a Medicaid-serving accountable care organization (ACO). The state of Ohio mandated ACO enrollment for Medicaid-eligible children with disabilities in 34 of 88 counties effective July 2013. Research participants were queried in focus groups and individual interviews about their children’s care experiences and care coordination after enrollment. Most told researchers that they themselves are their children’s care coordinators, and many indicated that resource scarcity is a more pressing problem than fragmented care. Data analysis identified a theme of scarcity and four categories of insufficiency that made caregiver efforts on behalf of their children more difficult: a lack of health services under managed care, resource constraints on other agencies and programs for which families were eligible, a lack of financial support, and a lack of family support. A conceptual framework places ACO care coordination among more upstream factors and identifies ways in which ACOs serving Medicaid populations may wish to address the social determinants of the well-being of children with disabilities. Implications for future research are discussed.     

Domestic violence: analysis of a community safety alarm system

This paper presents the findings of an analysis of the trial period of a local authority community alarm system adapted to protect adult and child victims of domestic violence and enable them to remain living in their own homes. The system was augmented as a response to government guidance on promoting interagency initiatives to tackle the crime of domestic violence. Qualitative and quantitative research methods were employed to seek the perceptions and experiences of referrers, service users and potential service users in the context of the administration, resource implications and cost‐effectiveness of the new system. The evaluation discovered that potential service users were anxious about police and social services involvement in relation to child care. The system was considered to be protective, enabling women and children to remain in their own homes, and relatively cheap to operate. It has the potential to provide a deterrent to perpetrators and enhance interagency cooperation in protecting children, subject to further refinement and longer‐term evaluation. Copyright © 2001 John Wiley & Sons, Ltd.     

Marginalisation processes in inclusive education in Norway: a longitudinal study of classroom participation

The aim of this paper is to describe the classroom participation of primary school children with disabilities who attend regular schools in Norway; to explore how relations between children with disabilities and their environment change, and further to chart how schools act in response to such change. The analyses are based on a life course study with data gathered from interviews and questionnaires given to the parents of children with disabilities born in the period between 1993 and 1995. The results show an increasing marginalisation of children with disabilities who receive their primary school education at regular schools. Despite the fact that public policies in Norway are based on a relational understanding of disability, thus suggesting that educators would make considerable efforts to accommodate children with disabilities in regular schools, the reality is that schools take an individual approach to children with disabilities which reflects a medical understanding of disability.     

The Postadoption Needs of Adoptive Parents of Children With Disabilities

Adoptions of children with disabilities are considered special needs, due to the higher level of support needed pre- and postadoption by families and children for adoptions to succeed. Despite this fact, very few studies examine the specific postadoption experiences of families with children with disabilities. Using secondary analysis of a national survey of adoptive parents, as well as interviews and a focus group with adoptive parents in one state, this study examines families’ with adopted children with disabilities challenges and unmet needs after adoption, as well as the postadoption needs and experiences of adoptive families with children with developmental and intellectual disabilities and adoptive families of children with emotional, behavioral, and mental health disabilities. Findings indicate that families with children with disabilities do report higher rates of challenges and barriers to service access, and that this is particularly true in families with adopted children with emotional, behavioral, and mental health disabilities. Implications for research and practice are discussed.