Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Seeing the Invisible Children and Young People Affected by Disability

This paper presents a brief review of literature relating to children in families with a disabled member, including the 'young carers' and disability studies literature, and relevant works from the social psychology and sociology of childhood. Key themes identified in the literature are then illustrated by findings from two exploratory research studies that sought to explore the experiences and service needs of children in families with a disabled member, within two Scottish areas. The authors suggest that, although young people affected by disability in the family, including young carers, face significant problems, particularly in socially disadvantaged areas, there are other issues that need to be addressed. Alternative conceptual frameworks are proposed, which challenge the dominance of the young carers research paradigm.     

A cross-national and comparative classification of in-country awareness and policy responses to ‘young carers’

The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children – known as ‘young carers’ – will be providing regular and significant care, either episodically or over many years, often ‘hidden’ to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country’s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors’ extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.     

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.     

Parents,services and system: an exploration of power dynamics in future planning among parent carers for people with disability

Interactions between services and families have significant implications for families planning for the future needs of a family member who has a disability. However, little research interrogates the implications of these relationships for parent carers’ agency in this planning. This qualitative study explored parents’ experiences with public and not-for-profit services during planning. Findings revealed varied and fluid power dynamics, with attempts by carers to shift to more productive power relations, which carried risks and costs. In a context characterised by systemic constraints, these shifts create an iterative planning process, and highlight the need to support parents to use power productively.     

Engaging with Disability Services: Experiences of Families from Chinese Backgrounds in Sydney

People from Chinese backgrounds remain underrepresented in disability service use. This paper explores family experiences of using child disability support services to understand how migration and their cultural expectations about disability and service affect the way they use services. Qualitative semistructured interviews were conducted with 13 family carers in Sydney. They were striving to gain good support for their child from formal services. However, most of them were reluctant to express any dissatisfaction to service providers, which meant that assertively requesting different support was difficult and culturally inappropriate. In response, service providers can design nonconfrontational ways to elicit this vital information and support families to gain experience tackling conflict.     

Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.     

Sources of Double Disadvantage for People with Disabilities Living in Remote and Rural Areas of New South Wales, Australia

This study demonstrates how people with disabilities living in remote and rural areas experience double disadvantage in regard to receipt of services. They tend to experience similar disadvantages to other remote and rural dwellers (as compared with their urban counterparts), but these disadvantages are compounded by those associated with living in an environment which does not cater for the needs of people with disabilities. Findings display how geographical, physical, cultural, social and psychological factors within the external environment create disadvantages for the individual. The project involved data collection from people with disabilities, disability groups, service providers, families and carers through consultations and field trips. Major issues emerging from consultations were concerned with: transport and distance, isolation, the need for more consumer involvement, the nature of service provision (appropriateness, flexibility, co-ordination and location), the need for community and professional disability awareness education, protection of rights, carers and respite care, accommodation and housing, education, employment, information dissemination and access to specialised equipment. Comparison with overseas studies indicates that findings from this Australian study have applicability in other countries which have large remote and rural areas.     

Groupwork with women who have a child with a developmental disability

Abstract

The purpose of this paper is to show how groupwork with a feminist approach can be an effective and empowering form of intervention for women who are mothers of a child with a developmental disability. Women are usually the primary carers and are often isolated with no-one to share their thoughts, feelings and concerns. A group provides an opportunity to bring some of these women together to share their experiences and offer each other emotional support, feedback and practical help. The content of the group looks at issues related to women in general as well as specific issues related to disability.     

Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a south London borough

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded.     

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are 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.     

My home, your workplace: people with physical disability negotiate their sexual health without crossing professional boundaries

This paper aims to describe research that examined the views of people with physical disability, living in Australia, of their sexual well-being needs from their own perspective. We explored the impact their sexual well-being needs had on their relationships with professional carers. A social model of disability was used to understand how sexual well-being is facilitated or denied in community care. We also explored whether clients' sexual well-being needs could be met without carers or clients 'crossing the line'. Our findings indicate the multiple ways that 'professional boundaries' were negotiated between clients and professional carers. The data show that the location of the 'line' changed, depending on a range of personal, social, economic and environmental factors. The data also show a gap between the sexual well-being needs of people living with a physical disability and the level of support provided at the social and organisational levels. Suggestions are made for research and practice directions.     

Experiences of families with relatives with intellectual and developmental disabilities in a consumer-directed support program

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer-directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts and changes. This context provided a rich environment to explore the benefits of the program, as well as oppressive forces creating barriers to the control of financial resources by individuals with disabilities and their families. Financial benefits, benefits from respite and personal assistance services and prevention of undesirable institutional placements were major themes that emerged and triangulated with previous research. The following themes emerged concerning barriers to the control of financial resources: provider and professional control, disability as a deserving group, fraud and abuse perceptions and familism. These themes appear to fit well within a social model of disability applied to the family.     

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of people who live with learning difficulties in order to inform local service development. Thirty-five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self-limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.     

A qualitative analysis of child protective services practice with children with developmental disabilities

The purpose of this study was to examine Child Protection System (CPS) practice with children with developmental disabilities. This study used an emergent design, ethnographic interviews, purposive sampling, inductive data analysis, and grounded theory building. Ethnographic interviews were conducted with foster families, administrators, intake screeners, special investigators, and workers in one local CPS office. Participants expressed concern about the ability to identify disabilities, placement options, services to meet complex needs of children with disabilities, training and support for families, collaborative arrangements with other agencies, and disability training for CPS workers. Findings suggest strategies for improving CPS practice for children with developmental disabilities.     

‘Similar but Different’ Conversations: Working with Denial in Cases of Severe Child Abuse

This article describes a particular aspect of a service called ‘Resolutions’ that has been developed at the NSPCC Child and Family Centre in Bristol, England. The Resolutions service works with families where parents and/or carers are disputing responsibility for serious abuse of their children, but where child protection agencies deem at least one of them culpable on a balance of probabilities. The service's general approach to developing partnerships with families is briefly considered, but the article concentrates on a particular approach. This is where parents and/or carers who are disputing abuse of their children roleplay a ‘similar but different’ family. This enables key issues in relation to child abuse to be discussed by the parents and/or carers. It also facilitates the gaining of greater understanding that helps them ensure the future safety of their own and other children.     

Spirituality in Latino families of children with autism spectrum disorder

Research on Latino parents of children with intellectual and developmental disabilities (IDD) suggests that these parents often use spirituality to conceptualize and to cope with their child’s diagnosis. However, there are no studies that examine religion among Latino parents of children with autism spectrum disorders (ASD). The current study explores how Latino parents of children with ASD incorporate spirituality into their conceptualizations of their child’s disability. In the current study, 34 Latina mothers of children with ASD were interviewed about autism-related services, family characteristics, and cultural beliefs including spiritual beliefs. Thematic analysis of the transcribed interview data relating to spiritual beliefs was conducted for the present study. Most mothers endorsed beliefs that their child with a disability was a message from God. Within this theme, mothers reported beliefs that their child was a blessing from God, a test from God, a sign from God or that the parent was special. Other parents believed that having a child with a disability was not an act of God, but related to biomedical factors, and another group of parents was unsure about the spiritual meaning of their child with a disability. Lastly, some mothers reported that their larger cultural group believed that having a child with a disability was a punishment or a negative sign from God but they markedly rejected that conception. These findings suggest that providers working with Latino families of children with ASD should acknowledge the importance of spirituality for these families.     

Disability facilitators' views of their work with children/youth with disability in South Africa

Children and youth including those with impaired body function or structure, in under resourced areas, can be disadvantaged in terms of education and health care, and can experience social hardship. Within South Africa, personal, health and education support to individual children and their families in under-resourced areas is provided by care workers from the National Association of Child Care Workers. This organisation also provides training and support to their care workers to take on the role of Disability Facilitator, to extend their services to children with impaired body function or structure. This study established the views of Disability Facilitators about their work. Fourteen participants (aged 25–54 years) were individually interviewed at their own worksite. Two themes were identified from the data - Empowerment and Burden of responsibility.The theme of ‘Empowerment’ encapsulated how participants viewed disability more widely than as it relates to impaired body function and structure. Disability Facilitators empowered children and their families in a holistic way, and advocated within their community to address negative perceptions about disability. They supported the wellbeing and participation of children with disability within their local communities, and perceived their work as motivating and worthwhile. However, the second theme ‘Burden of responsibility’ encapsulated the challenges in feeling solely responsible for disability support in their community and in providing care and support for children living in dysfunctional families. They recommended all care workers receive training about disability issues to reduce the burden of responsibility on themselves. This study has demonstrated the worth of Disability Facilitators to address the challenges inherent in disabling environments. This approach to service provision offers useful insights that could be adapted into other countries and contexts.     

'Young Carers' and Disabled Parents: Time for a change of direction?

In less than a decade, children who provide care for ill or disabled parents and siblings have become a major target of social welfare services. 'Young carers' suffer, it is suggested, from a degradation in mental and physical health, have damaged educational careers, restricted social networks, and will suffer long-term consequences in adult life as a result of their childhood caring roles. This paper argues that limited empirical evidence exists for these claims and that, where legitimate concerns arise, they are frequently related to poverty, social exclusion, and unsupported or inadequate parenting, and have no direct relationship to illness or impairment. While dedicated services to young carers have made a valuable contribution in highlighting an important social issue, a radical review of their place in the overall structure of support services for families affected by illness or disability is long overdue.