Consulting the Children: Interviews with Children Using Residential Respite Care Services

The Children Act, 1989, requires that services for children are provided in partnership with parents and that the wishes and feelings of the child and his/her parents are ascertained and given due consideration (sect. 22). As part of a research project assessing the quality of services to children with disabilities under the Children Act, the authors carried out evaluations of six residential respite care services. The services were used mainly by children with learning difficulties, some of whom had little or no speech. Staff at the schools attended by the children were asked to interview them, so that their views could be included in the evaluation reports. Interview schedules and aids to communication were devised to try and enable all the children to express their views. This article describes the initial schedules and the changes made in the light of experience during the research. The authors then summarise the children's responses and consider how the process of consultation could be improved in future.     

The connections between disability and child abuse: A review of the research evidence

Two possible connections between disability and abuse are explored: that disability can be the outcome of abuse, and that children with disabilities are differentially vulnerable to abuse. Evidence supporting both propositions is presented and assessed. Major problems in research and research methods are highlighted: the differing definitions of disability and abuse, the reliance on data drawn from clinical samples and case files, and failure to develop innovative methods which would enable direct participation of children and adults with a range of disabilities. The paper concludes that our current knowledge base is inadequate to either distinguish between the two connections or provide clear guidance on a range of concerns within the child protection field.     

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.     

Child health and parental paid work

We ask how the paid work of Canadian married mothers and fathers is affected when a child has a physical/mental condition or health problem that leads to restrictions in daily activities. Using the Statistics Canada National Longitudinal Survey of Children and Youth, we find that married mothers of children with disabilities are less likely to engage in paid work and/or work fewer paid hours per week. No statistically significant changes in paid work participation or hours are apparent for fathers of the same children. We find, moreover, evidence that the degree of specialization within families increases when there is a child with a disability. These responses are consistent with traditional gender roles within families, and may make sense as a ‘household’ coping strategy. However, such a division of labor may generate economic vulnerability for mothers compared to fathers.     

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.     

Bridging the gap: Investigating the abuse of children with multiple disabilities

This is a summary of a series of practical papers written to help bridge the ‘gap’ between the fields of child protection and childhood disability, with a view to improving practice in child protection work with severely disabled children. Particular attention is paid to the needs of children using alternative communication systems. The theme of the paper is that disabled children are in most senses just like other children, but may have particular needs in relation to the investigation of abuse, as well as being particularly vulnerable to abuse. Issues around the assessment of suspicion, preparation for interviewing and the interview process are presented. The needs of the child, the accompanying adult and the child protection worker are considered. Guidelines and recommendations for practice at different stages of the investigation are given. The need to adapt the investigation to the particular needs of the child is emphasized throughout.     

Impact of child health and disability on subsequent maternal fertility

The prevalence of chronic conditions among children has been rising in the past four decades. Despite the policy relevance and plausible mechanisms through which child disability and severe early life health conditions can impact subsequent maternal reproductive behavior, there has been limited investigation of this question particularly in the US. Child disability or severe early life health problems such as very preterm birth (VPTB) and very low birth weight (VLBW) can constrain household resources to have another child but may also increase parental demand for healthy children and modify allocation of resources between children. Empirical assessment of this question is complicated by unobservables such as maternal health and preferences. We examine whether giving birth to a child with disabilities or severe adverse birth outcomes including VPTB and VLBW impacts subsequent maternal fertility. We employ a mother fixed-effect duration model for maternal fertility over time as a function of the proportion of previously born children with disabilities/health conditions in order to account for time-invariant unobservables, using merged data from the 1993 National Health Interview Survey and 1995 National Survey of Family Growth. We find no evidence that having disabled children reduces subsequent live births when using the mother fixed-effect model, in contrast to the classical model using within and between mother variation which suggests a fertility decline. Similarly, we find no evidence that having VPTB or VLBW children reduces fertility. Overall, our findings indicate no impact of child disability or health conditions on subsequent maternal fertility. Additional analyses excluding women who may qualify for AFDC show overall a similar pattern of results, suggesting that the findings may be generalizable post the AFDC. Time-varying unobservables may still be at work, but they likely result in an opposite (negative) bias toward reduction in fertility.     

Children with disabilities in Swedish child welfare – a differentiating and disabling practice

ABSTRACT

Research shows that children with disabilities are victims of violence and abuse to a higher extent than other children and thus need support from social services. In Sweden, cooperation between two different social services units is required to support children with disabilities in socially vulnerable families. In this study, we have examined the intersection between children and disability in a Swedish social services context from the perspective of childhood studies and disability studies. The reasoning of the two units including the child perspective emerged during focus group interviews based on two vignettes. The results show two different rationalities, which has consequences for the disabled child. In spite of a social policy where the ‘best interests of the child’ are meant to prevail and disabilities are meant to be interpreted as barriers in society, children with disabilities seem to be reduced to individuals who are lacking in ability and competency and who are profoundly victimised by power structures that favour the adult perspective in social services.     

The elementary-school functioning of children with maltreatment histories and mild cognitive or behavioral disabilities: A mixed methods inquiry

This mixed methods inquiry examined the school functioning of elementary school-aged children with maltreatment histories and mild cognitive or behavioral disabilities. Quantitative analyses of linked social service and education administrative data bases of 10,394 children in Minnesota with maltreatment histories indicated that 32% were eligible for special education services. Of those children with maltreatment histories and identified disabilities, 73% had mild cognitive or behavioral disabilities. The most frequent primary disabilities categories were specific learning disabilities (33%) and emotional/behavioral disabilities (27%). Children with maltreatment histories and mild cognitive or behavioral disabilities scored significantly below children with maltreatment histories and no identified disabilities on standardized assessments of math and reading, and this gap increased with grade level for math. Qualitative interviews with 22 child welfare professionals and 15 educators suggested why some children with maltreatment histories, especially those with mild cognitive or behavioral disabilities, struggle in school. Risks to school functioning included children's and families' multiple unmet basic and mental health needs which can mask or overshadow children's mild disabilities; poor cross systems collaboration between child welfare, education and mental health systems; and inadequate funding, especially for mental health services. Protective factors included child engagement in school, parent engagement with child welfare services and a professional culture of cross-systems collaboration. Implications are discussed for holistic child, family and system-level interventions.     

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.     

Strengthening Social Work Approaches Through Advancing Knowledge of Early Childhood Intervention

Early childhood professionals—social workers, educators, speech therapists, occupational therapists, physical therapists, pediatricians, and others—create the foundation for a life-long duration of experiences that families, who have children with disabilities, will have with various professional groups. The nature of the early childhood interventionists' interaction, treatment, services or supports of the child and the attitudes conveyed to families during these critical early years may be a significant factor in the willingness of families and young adults to continue to pursue therapeutic and supportive services. With insights into early intervention best practices, social workers are likely to find themselves in a preferred position to plan appropriate family-focused intervention strategies that may encourage success and prevent complications or a worsening of specific initial conditions among children with disabilities.     

“Not in the Same Sandbox”: Cross-Systems Collaborations Between Early Intervention and Child Welfare Systems

Maltreatment and disability often coexist in the lives of young children, as children who are maltreated are at a higher risk for developing a disability, and, conversely, children with a disability are at a higher risk of being maltreated. Despite being supported by multiple service systems, young children with disabilities who have experienced maltreatment are often not optimally supported by these service systems. We utilized a mixed methods design to explore how early intervention and child welfare collaborate to support young children with disabilities who have experienced maltreatment. Implications and future directions for research, policy and practice are discussed.     

Unmet service needs of families of young children with chronic illnesses and disabilities

Data about health and educational services were collected from 187 families with young children (under two years) who have chronic illnesses and disabilities. The purpose was to assess parents' satisfaction with services their families received and to identify families' unmet service needs as well as the reasons for these unmet needs. Although families' ratings of the adequacy of services are relatively high, 28% of the families report unmet service needs. The unmet needs most often reported are occupational, physical, or speech therapy; respite care/child care; and special education. Lack of funding is the most commonly given reason for unmet needs. Children with multiple impairments are at highest risk for unmet needs. Only 22% of unmet needs reported at the initial interview have been met by the time of the six-month follow-up. Increased coordination and monitoring of services across service sectors are indicated. Her research interests include the effects of disability on family identity and families' responses to minority stress. She received her Ph.D. from the University of Minnesota. She gratefully acknowledges Shelley Blazis and Nadav Casuto for statistical consulting. Her research interests focus on the impact of chronic illness and disability on families. She received her Ph.D. from the University of Minnesota. Her research interests include families and health and chronic illness and disability in children. She received her Ph.D. in Family Social Science at the University of Minnesota. His areas of interest include neurodevelopmental outcomes of low birth weight infants and training in developmental pediatrics. He was graduated from the University of Minnesota Medical School. His areas of interest include adolescents with chronic illness and disabilities, adolescent sexual decision making, and international adolescent health care issues. He was graduated from Howard University College of Medicine was awarded his earned doctorate in Health Policy from the University of Minnesota. Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research Grant #H133890012.     

Exploring the specific needs of an understudied group: Children with intellectual disability in residential child care

Children and adolescents who live in out of home care in the child protection system are considered to be vulnerable to manifesting mental health disorders as well as other types of difficulties. This risk is greater in the case of children who display any type of disability. The aim of this study is to profile the state of health and well-being of a group of children presenting intellectual disability who live in residential care in a Spanish autonomous community and to compare these results with their non-disabled peers.     

Children with disabilities and chronic conditions and longer-term parental health

This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994–2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental health. We find mother's health to be negatively affected, particularly if the disability is longer-term. Within families, the wife's health deteriorates relative to her husband's when they are parenting a child with a disability. These results are consistent with Akerlof and Kranton's [Akerlof, G., Kranton, R., 2000. Economics and identity. The Quarterly Journal of Economics 105(3), 715–753] arguments that ‘identity’ is an important determinant of both behaviour and well-being. For parents of children with disabilities, the behaviour associated with a traditional ‘good mother’ identity (e.g., care-giving) appears to have more adverse health consequences than the behaviour associated with a ‘good father’ identity (e.g., breadwinning).     

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.     

Benefactors and Beneficiaries? Disability and Care to Others

Individuals with disabilities often have limitations that require care from others to increase functioning and facilitate activities of daily living. Despite these care‐receiving needs, evidence suggests people with disabilities are also care givers. This study uses the 2008–2015 American Time Use Survey to examine the association between the presence of sensory, mental or cognitive, physical, or multiple limitations and the likelihood and intensity of time spent in primary child care, secondary child care, adult care, care of nonhouseholders, and support care (housework). Net of socioeconomic characteristics, the authors do not observe consistent differences in predicted child care time by disability status, although men with disabilities spend less time in care to adults and nonhouseholders. The largest difference in predicted care time by disability status occurs in support care. Overall, the results challenge the traditional focus on people with disabilities as only beneficiaries of care to document their role as benefactors.     

Parents’ and Professionals’ Perceptions of the Services of Families of Children with Intellectual Developmental Disabilities

This study aims to investigate differences in perception among Kuwaiti parents, teachers, and employees regarding the services that are needed in different special education settings. The participants (n = 135) included 45 parents of children with intellectual developmental disabilities (IDD), 63 teachers in special education schools, and 27 employees working in the Higher Council of the Disabled. A survey was conducted using Hassan’s (The needs of parents of children with disabilities in relationship with child’s age, gender, and type of disability, 1992) Arabic version of the Family Need Inventory. The findings showed differences in perception among parents, teachers, and employees regarding what they consider to be the most important services for families of children with IDD. Another result showed significant differences in perception among the three groups regarding services (match or/and mismatch of responses), except for 3 out of 35 types of services. Suggestions and implications are discussed to provide information to social service providers to help them evaluate the laws that pertain to disability in Kuwait. The findings of this study will help social service providers determine and implement laws that meet the needs of parents of children with IDD and give them the right to be full partners in their children’s education.