Gwynnyth Llewellyn

Prevalence and Outcomes for Parents with Disabilities and Their Children in an Australian Court Sample.

OBJECTIVE The purpose of this study was to obtain sound prevalence and outcomes data on parents with disabilities and their children in statutory child protection proceedings. METHOD The court files of all care and protection matters initiated by the statutory child protection authority and finalized in a 9-month period (n=285) at two Childrens Courts in NSW, Australia were reviewed. RESULTS Parents with disabilities featured in almost one-third of the cases (29.5%). Parental psychiatric disability was most prevalent at 21.8% followed by parental intellectual disability (mental retardation) at 8.8%. Significant associations were found between parental disability and court outcome with a disproportionately large number of children of parents with intellectual disability being made wards of the state. CONCLUSIONS The findings demonstrate that parents with disabilities are significantly over-represented in statutory child protection proceedings and that the outcomes of these proceedings vary according to disability type.

Stereotypes, parents with intellectual disability and child protection

As more people with intellectual disability have children, serious concerns are being raised about the unusually high rate at which their children are removed. This review describes how parents with intellectual disability fare in child protection and court processes and offers both an empirical and a legal critique of frequently encountered presumptions about their parenting capacity.

Protection from harm: the experience of adults after therapy with prolonged‐speech

BACKGROUND It is well documented that adults can control stuttering if they use certain novel speech patterns referred to generically as prolonged-speech (PS). These speech patterns were refined in the 1960s and developed into behavioural treatment programmes. The bulk of available PS treatment research has focused on speech parameters thought to reflect favourable treatment outcome. Considering this, and that post-treatment relapse is known to be common, clinicians and researchers could be usefully informed by knowledge about the experiences of those who receive these treatments. Subsequently, they could use such information in attempts to control stuttering in their clients. Yet, at present, systematic research on this topic is scant. AIMS The continued development of PS treatments could be usefully informed by research into the experiences of those who use PS to control stuttering. Hence, that is the topic of the present report. METHODS & PROCEDURES The method used was phenomenology. Participants were a purposive sample of 10 people who had received PS treatment. During a 2-year period, a collaborative approach to the study of the topic was developed between the participants and interviewer. Interviews were from 1.5 to 2 hours, and a total of 34 interviews and discussions were undertaken with participants. Transcripts of these were used to generate text from which themes were identified using line-by-line, holistic and selective approaches. OUTCOMES & RESULTS The main findings were that even after therapy with PS there is a continued risk of stuttering occurring, and although adults have the novel experience of controlling stuttering, they also continue to experience feeling different from those who do not stutter, which may be exacerbated after therapy. Given the negative consequences associated with stuttering and feeling different, the essence of the experience after therapy with PS is that adults use their own resources to integrate behavioural skills with existing experiences in order to protect themselves from the harm of stuttering as best they can. PS changes speech, but not the dynamic and often unpredictable communication situations of everyday life. Hence, the maximum benefits of PS are attained when clients use a strategic approach to control stuttered speech and daily communication. CONCLUSIONS These findings are consistent with the results of existing outcome research as well as with other current research from the present group. Their implications are discussed in relation to the structure of PS treatments as well as in relation to future PS outcome research. The clinical implications of these findings are discussed in terms of informing prospective clients of the experiential consequences of PS, selecting clients who might benefit from PS and in terms of assisting clients to achieve optimal benefits from PS.

Misconception: The Experience of Pregnancy for Women with Intellectual Disabilities

Abstract The experience of pregnancy and motherhood, from a womans point of view, has only been considered worthy of research in recent decades. In this time, a small number of studies have examined the experiences of mothers with intellectual disabilities. No study to date has focussed on the lived experiences of pregnancy for women with intellectual disabilities. This paper reports findings from a phenomenological study into becoming a mother for women with intellectual disabilities. We focus on the stories of three Australian women with intellectual disabilities about their experiences of being pregnant. Three key themes of the pregnancy experience for these women are illuminated. First, through experiencing their pregnant bodies the women began to understand themselves as mothers. Secondly, the women actively made decisions regarding how their baby would be cared for. Thirdly, the women involved trusted others in these important decisions. This paper gives voice to a group of marginalized women whose...

Disability and Discrimination in Statutory Child Protection Proceedings

Families headed by parents with intellectual disability [1] are among the most vulnerable in the community. Poverty, social isolation and the lack of adequate support services all threaten their well-being. People with intellectual disability who are parents must also contend with out-of-the-ordinary treatment in statutory child protection proceedings. Legal scholars writing mainly in the North American context cite cases in which the children of these parents have been removed despite lack of evidence of abuse or neglect, or when evidence was refuted or, indeed, even when the parent was shown to be providing adequate care. In cases of substantiated abuse and/or neglect, support has not been given to the parent or parents before their children were removed. In this paper, we describe these discriminatory actions and discuss the political, social and institutional conditions that have lead to such extreme consequences for people with intellectual disability who also happen to be parents.

The mental health of young people with disabilities: impact of social conditions

BackgroundYoung people with disabilities have poorer mental health than their non-disabled peers. However, people with disabilities are more likely than others to experience financial hardship and low social support, both of which have been linked with poor mental health outcomes. This article explores the extent to which the relatively poor mental health of young people with disabilities is related to the social conditions in which they live.MethodsSecondary analysis was performed on Wave 6 (2006) of the survey of Household Income and Labour Dynamics in Australia (HILDA). This nationally representative sample included 3,392 young Australians, aged 15–29, of whom 475 reported having a long-term health condition, impairment or disability.ResultsYoung people with disabilities reported poorer mental health than their non-disabled peers. However, this relationship was moderated by both social adversity and social support, with minimal differences in mental health observed between the groups under conditions of high social support and low financial hardship.DiscussionThe results suggest that disability represents a potential adversity that may be exacerbated or ameliorated by the effects of wealth/financial hardship and social support.ConclusionIt may be possible to improve the mental health of disabled people by addressing their social exclusion.

Developmental Profiles of Children Born to Mothers with Intellectual Disability.

The developmental status of 37 pre-school aged children born to mothers with intellectual disability was assessed and the relationship between developmental status and selected child, maternal and home/environment characteristics was examined. The developmental status of the children varied markedly. Controlling for possible organic pathology, the development of these children did not vary significantly from age-norm expectations in four domains: physical, self-help, social and academic. No statistically significant correlation was found between developmental status and characteristics of the mother or home/environment. The key to prevention may lie in the provision of suitable antenatal and maternity services to ensure the best possible birth outcomes.

The Mental Health of Australian Mothers and Fathers of young Children at risk of Disability

Objectives: To: (1) determine the strength of the relationship between risk of child disability and parental mental health in a nationally representative sample of Australian families with young children; (2) estimate the contribution of distress among parents of children at risk of disability to overall parental psychiatric morbidity; and (3) explore the extent to which between‐group differences in parental mental health may be attributable to differences in exposure to other risk factors.

Post-parental care: a new generation of sibling-carers

Family, friends and neighbours are typically more important in the lives of most people with developmental disabilities than are service agencies and professionals (Prosser & Moss, 1996). There are approximately 9,000 parents over the age of 65 years in Australia who are still living with an adult son or daughter with a disability. Simply put, their greatest concern for the future is ‘‘Who will look after my ‘child’ and in the way that I have done?’’ (Llewellyn, Gething, Kendig & Cant, 2003). The death or incapacity of the parent who has provided a lifetime of love, care and support, coupled with the associated loss of home and surrounding networks, can have a devastating impact on the person with a disability. Few people with a developmental disability living in the parental home marry or have children, and consequently they lack the traditional family members who would support them as they age. This lack of support poses the dilemma of who will provide the person with a developmental disability with the support they may need when their parents die or become too frail to continue supporting them in the family home. Caring, according to Twigg and Atkin (1994), almost always occurs within a context of kinship obligation with an underlying emotion of love between the carer and the person they are caring for and a sense of responsibility by the carer for the cared-for person. A sibling is likely to be the closest relative of the person with a developmental disability when parents die. The main informal network for the person with a disability may now hinge on their sibling relationship. Parents undoubtedly feel both love and responsibility for their offspring. Do siblings share these feelings for each other? According to Cicirelli (1995), the sibling relationship is potentially the longest standing relationship that a human being will have and, as the role of sibling is ascribed rather than achieved, it remains part of a person’s identity regardless of changes in life fortunes or circumstances. As the saying goes: ‘‘you can choose your friends but you can’t choose

Older disabled workers’ perceptions of volunteering

The activity of volunteering is readily available to, and undertaken by, able‐bodied people in Australia and is recognized as a valuable social pursuit, particularly among citizens of retirement age. Despite the known benefits of volunteering, however, there are few reports of disabled people participating as volunteers and little is understood of their experiences or perceptions of volunteering. The aim of this study was to explore how older workers within supported employment settings perceived the opportunities for and barriers to volunteering. Fourteen people with long‐standing impairments participated in this small qualitative study. Overall the participants were positive about volunteering, but noted they might require support to volunteer successfully. Drawing upon the participants’ views, recommendations are made for developing training. Disabled workers facing retirement need to be supported to have opportunities for active participation in the community as volunteers if so desired.