Single Parenting in Families of Children with Disabilities

Rearing a child with disabilities is a challenge, per- haps even more so for single parents who most often are women. Stress and negative psychological effects have been considered likely outcomes for parents of children with disabilities. With the increased family focus in the provision of services for children with disabilities, it becomes even more important to understand the sources of stress and the types of adaptations made in these families. The research literature was analyzed and similar results were found. Single mothers of children with disabilities often were younger, had less education, and lower incomes. Few studies included these socio- economic factors. Findings indicate that gross differences betweensingle- and two-parent mothers tended to become nonsignificant when maternal education and income were taken into account. Stress levels and adaptation were not pervasively different for single mothers and mothers who were parenting with a partner, after SES variables were controlled. On a few dimensions-including family harmony, integration, and cohesion-some studies found mothers in single parent families to be at a slight disadvantage relative to two parent families. Research findings indicate that other factors need to be considered in research and in provision of services to understand the interplay between stress and adaptation and to facilitate the fami- lys coping. Further study is needed on factors on two levels; task demands and emotional responses, the diversity among mothers, their life situations, and their task demands must be recognized, and socioeconomic conditions and participation by other adults in care- giving. Positive adaptation by single mothers of children who have disabilities is a reasonable expectation; services should build upon family strengths and competencies.     

Successful Adoption of Children with Down Syndrome and Other Developmental Disabilities

Abstract

Children with many types of developmental disabilities have been successfully adopted. Nonetheless, there appears to be a belief among both adopters and some adoption workers that children with Down syndrome are especially easy to rear. The current paper uses different methodological strategies, including case-by-case matching and regression techniques, to test hypotheses relating to better outcomes for parents and families who have adopted children with Down syndrome in comparison to children with other developmental disabilities. The results demonstrated successful functioning for parents and families on a variety of measures, regardless of whether the adopted children had Down syndrome or other developmental disabilities. The positive stereotype for Down syndrome was not supported.     

Older children in preadoptive homes: issues before termination of parental rights

In many jurisdictions, after the end of reunification services to birthparents, but before termination of parental rights, children are placed with parents who are licensed as foster parents but are committed to adopting the child. Using case examples, this article discusses the emotional and psychological difficulties often encountered by children and their prospective adoptive parents when birthparent visitation takes place and legal uncertainties exist. In addition, this article offers clinical and policy recommendations to help both the children and families in these situations as well as the professionals who work with them.     

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.     

Children of prisoners: exploring the impact of families' reappraisal of the role and status of the imprisoned parent on children's coping strategies

Qualitative data from a larger study on the impact of parental imprisonment in four countries found that children of prisoners face fundamentally similar psychological and social challenges. The ways that children cope, however, are influenced by the interpretative frame adopted by the adults around them, and by how issues of parental imprisonment are talked about in their families. This article argues that families have to reappraise their view of the imprisoned parent and then decide on their policy for how to deal with this publicly. Their approach may be based on openness and honesty or may emphasise privacy and secrecy, or a combination of these. Children are likely to be influenced by their parents'/carers' views, although these may cause conflict for them. Where parents/carers retain a positive view of the imprisoned parent, children are likely to benefit; where parents/carers feel issues of shame and stigma acutely, this is likely to be transmitted to their children. This is important for social workers and practitioners involved in supporting prisoners' families and for parenting programmes.     

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.     

Parental Caregivers' Desires for Lifetime Assistance Planning for Future Supports for Their Children with Intellectual and Developmental Disabilities

Future life planning is a growing concern among families with children with disabilities. This article presents a needs assessment evaluating feasibility of a new model for future life planning for family caregivers, Lifetime Assistance, which will provide ongoing planning and monitoring for individuals with intellectual and developmental disabilities. Using surveys informed by a series of focus groups, data were gathered from older and younger parents in one midwestern state regarding the potential program. Study results indicate that respondents did not feel the current system of support was adequate for planning for their child's future, nor sufficient for monitoring the quality of life for their children in the future. Although almost all families had identified a person to support their family members when they were no longer able to do so, parental caregivers overwhelmingly identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves.     

Assessing parents with learning disabilities: The parental skills model

Definitions of what constitutes adequate or inadequate parenting continue to be unclear. Not surprisingly, professionals who are required to formulate opinions regarding parental competency often experience difficulties with this task. These difficulties are further compounded when the assessment involves parents with learning disabilities. They comprise a heterogeneous population many of whom have varying deficits and skills. The Parental Skills Model outlined in this paper is offered as a guide to professionals in their assessment of such parents. The model focuses on three primary areas which have been identified as crucial to parenting, namely, parents' life skills, familial history and access to support/resources. When difficulties are encountered by parents with learning disabilities in any of these three areas it appears to have a direct and indirect effect on the child's care and development. A model of good practice is proposed and illustrated with a case study.     

The obscuring of class in memoirs of parents of children with disabilities

Many memoirs written by the parents of children with disabilities have been published in America, especially in recent years. Although they often tell tales of struggle and heartache, they are also often tales of parents and children who manage to overcome adversity. While these stories no doubt often give many new parents of children with disabilities hope, they also obscure the fact that members of different classes have different access to various coping strategies for the extra challenges of raising a child with a disability. This paper examines nine memoirs and how the authors were able to use resources available to members of the middle and upper class (finances, time, and social connections) to more easily accomplish modern ideals of disability in America: de‐institutionalization and inclusion. The coping strategies of the lower class are absent from the discussion. Finally, the paper argues that it is ill‐advised to place such a heavy burden on families in accommodating persons with disabilities.     

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.     

The enforcement of normalcy in schools and the disablement of families: unpacking master narratives on parental denial

The notion that some parents may be ‘in denial’ is a pervasive theme in dominant discourses on families of children with disabilities. In this analytic essay, I deconstruct cultural and institutional master narratives on parental denial and discuss their role in the marginalization of students with disabilities in schools. I argue that discourses on parental denial privilege the perspectives of those in positions of power and control, leave the practice of ability-based segregation in schools unexamined, and discredit agency among families. Additionally, drawing from existing narrative-based research, I explore alternative interpretations of parents’ responses to their children’s differences, situating these in the framework of critical disability studies.     

Struggles with Time: the careers of parents with adult sons and daughters with learning disabilities

The experiences of parents with adult offspring with learning disability and the meanings their parental careers have for them, has been the subject of very little empirical research. In this paper we describe and examine some of the features that gave shape and meaning to the day to day lives of parents of 33 co-resident adults with learning disabilities. Their accounts of their situations revealed that 'time' was a factor of some importance. Participants suggested that socialisation into the parental role was one that continued over the life course. In addition, they also felt that the services they received were based upon an inadequate and too narrow an understanding of how they experienced 'time'. The data reveal that both 'over time' and 'in time', parents struggled to maintain a set of aspirations for a typical life. The data show that for many parents there was a slow accommodation to the constraints of service provision and, as a result, their needs for service support became less extensive.     

Managing turning points and transitions in childhood and parenthood – insights from families with disabled children in Norway

This article explores turning points and transitions emerging in the life course of children with disabilities and their parents. Through in‐depth interviews with parents we found that a change appears in disabled children’s social participation and belonging, at approximately eight years of age for children with learning difficulties and at approximately ten years of age for children with mobility difficulties. Most of the parents experienced a ‘turning point’ that directed them into either marginal or inclusive positions in adulthood. The ‘transition’ emerges at a time described as a stable period of life for families in general and illustrates parents’ experiences of the importance of both ‘doing’ and ‘being’ in parenthood and childhood. Parents’ experiences are strongly interwoven with the child’s life and access or lack of access to services and relational responses.     

The Ethics of Research With Men who Have Learning Disabilities and Abusive Sexual Behaviour: a minefield in a vacuum

In the wake of the recent awareness of the sexual abuse of people with learning disabilities is the recognition that a small number of men with learning disabilities are themselves sexually abusing. The need to understand the men's behaviour and provide effective responses is pressing yet the search for an ethical course of enquiry appears illusory. The two conflicting dilemmas which make this task so difficult are whether the men's learning disabilities preclude their giving informed consent to the research process, and/or whether men who are sexually abusing have lost some rights to exclude themselves from research which is intended to prevent further abuse. This paper explores in depth these dilemmas and describes the authors' attempts to resolve them as they attempted to devise a protocol for consent to involvement in a qualitative study of men with learning disabilities who sexually abuse. Issues raised in this particular context have relevance to many other issues in learning disability services where robust ethical debate is needed, but often glossed over.     

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.     

Working with Parents of Exceptional Children: The Need for More Careful Thought and More Positive Action

The majority of studies relating to families of handicapped children emphasise the negative emotions of the parents, particularly initial shock followed by guilt, chronic sorrow and anxiety. Rarely have these studies relied on the parents' assessments of their own reactions. As a consequence of this, there is little recognition in the relevant literature of either the wide range of parental reaction or the successful and satisfying adjustments which many parents make. A second important limitation in these studies is the absence of a theoretical framework either to test the occasional contradictions that can occur or arising out of the findings themselves.

As an alternative approach, it is suggested that a theoretical position could be developed from the concept of need recognising that the needs of the parents are distinct from those of their handicapped child, although usually consistent with them. An analysis of the research literature (Burden, 1981) has already identified five areas of need-the need for information, support, advice, access to resources and opportunities for social interaction.

It is recognised that the concept of need is a necessary but insufficient basis for an adequate theory. The notion of support coinciding with the parents' reaction to transitions in the child's life is offered as an additional factor in the family's successful adjustment. Three other variables are cited as affecting parental adjustment-individual differences in resistance to stress; the extent and nature of the child's disability and the tolerance of the community to that particular disability. In developing this theoretical framework, reference is made to some of the practical problems associated with the implementation of professional services.     

Promoting effective working with parents with learning disabilities

The children of parents with learning disabilities are increasingly coming to the attention of child protection and children in need services. The current framework within which services are delivered identi?es the need to work cooperatively both across agencies and with parents themselves. The decisions taken by practitioners in the course of their assessment and support work should be in?uenced by a recognition of where the risks to this group of children lie and which factors are most likely to be associated with positive outcomes. This paper outlines risks to children associated with the parents' dif?culty in accessing appropriate antenatal care and the risk of developmental delay arising from both genetic and environmental in?uences. This group of children are also more likely to experience behaviour problems and language delay. Research has indicated a risk of neglect, but abuse, where it does occur, is more likely to be associated with partners or relatives. It is also clear that some children are more at risk than others, and intellectually able children, as well as those with high levels of dependency, may be the most vulnerable. Risks can be reduced when parents have access to good family and social support networks and professional support which is acceptable to them. Maintaining a small family size can also be helpful. If parents have had positive childhood emotional experiences, their chances of successful parenting are increased. Copyright © 2004 John Wiley & Sons, Ltd.     

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.     

The effectiveness of parenting support

This research review examines what is known about the effectiveness of parenting support, and assesses the international evaluation evidence focusing on primary and secondary prevention programmes. It outlines several factors affecting the success of parenting support interventions in terms of service implementation and delivery, as well as outcomes for children and parents. The conclusions highlight the need for more rigorous UK‐based evaluations, and for further investigation of the support services for specific parenting groups such as very vulnerable families, fathers, and ethnically diverse families. The review also underlines the need for further national policies that address the broader social inequalities affecting the impact of parenting programmes.     

Multi-family psychoeducation groups in the treatment of children with mood disorders

This study examined the impact of adjunctive multi-family psychoeducation groups (MFPG) on mood-disordered children aged 8 to 11 and their families. Participants were 35 children and 47 parents from families randomly assigned to either immediate MFPG plus treatment as usual (n = 18) or a 6-month wait-list condition plus treatment as usual (n = 17). At the 6 month follow up, immediate treatment families reported: Increased parental knowledge about childhood mood symptoms; increased positive family interactions as reported by the parent; increased perceptions of parental support as reported by children; and increased utilization of appropriate services by families. Expected impact on decreasing negative family interactions was not found. Results are largely consistent with hypothesized findings and support the need to further investigate the adjunctive role of psychoeducation in the treatment of childhood mood disorders.