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.     

Assistive technology and employment: experiences of Californians with disabilities

For people with disabilities, work remains the best route to independence and enacting one's own choices. Assistive technology (AT) is often crucial in removing barriers to employment, and in enabling workers with disabilities to work more productively. A participatory action research project known as Community Research for Assistive Technology surveyed people with disabilities using Independent Living Centers throughout California, in part to identify barriers to employment and study use of job-related AT to overcome such barriers. Across disability groups, disability itself was cited as the primary barrier to employment, with potential loss of benefits and lack of education cited as secondary barriers. A majority of working respondents reported using assistive technology (such as adapted telephones, wheelchairs, magnifiers, and adapted computer equipment) or services to perform job functions. The vast majority of those using job-related AT reported substantial benefits to their productivity and self-esteem. Employees' requests for AT as a workplace accommodation were granted more often than not, but many other employees had to pay for their own workplace AT.     

Understanding the Challenges to Providing Disabilities Services and Rehabilitation in Rural Alaska: Where Do We Go From Here?

American Indians/Alaska Natives (AI/AN) suffer from some of the highest rates of health and mental health-related disabilities. Despite high rates of disabilities experienced among this population, services available to treat the disabilities are extremely limited, especially within the rural Alaska context. Additionally, limited research exists regarding the perceived barriers to receiving disability services, the importance of treating disabilities within one's own community, and individual and community-level strengths that exist to help cope with the lack of services. This article attempts to bring awareness to these issues, as well as propose tangible solutions to help mitigate the barriers.     

Companion animals in families of children with autism spectrum disorder: Lessons learned from caregivers.

Companion animals (i.e., pets) have been increasingly recognized for the roles they play in families, including those with children with Autism Spectrum Disorder (ASD). This cross-sectional study explored the unique functions of companion animals within families with a child with ASD. Phenomenology was used to analyze the responses of participants (N = 338) who responded to a survey offered through the Interactive Autism Network. The study initially focused on dogs; however, the analysis was forced to expand to other species due to the data provided by participants. Seven major themes emerged: bonding and benefits, learning opportunities, barriers, grief, fit (match of family characteristics with those of the companion animal), safety, and alternative animals. Successful fit between companion animals and families was often described as necessary for beneficial functions. Barriers included necessary cost and time, as well as required supervision of interactions to enhance safety of the children and animals.     

Resource use of rural low-income families caring for children with disabilities

The Personal Responsibility Work Opportunity Reconciliation Act, Pub.L. 104-193 (PRWORA) was passed creating the Temporary Assistance to Needy Families (TANF) program. Since the passage of PRWORA, many families were able to leave the welfare rolls while those remaining on welfare were likely composed of families facing barriers to leaving, such as caring for children with disabilities. This project addresses the gaps in knowledge regarding low-income families caring for children with disabilities by conducting qualitative research investigating the resources used by these families to find and keep employment and child care. The study used a sample from a research project entitled ‘Rural Families Speak’ and examined the data of 26 families caring for children with disabilities. Analysis resulted in policy recommendations for increasing the efficacy of the programs designed to help these families.     

Individualised Support and Funding: building blocks for capacity building and inclusion

The paradigm in disability supports is shifting away from institutional services and professional control towards self-determination and community involvement of people with disabilities. The assumption that the best way to provide disability supports is for government to give money to agencies or services, rather than directly to people with disabilities and their support networks, is being challenged. This article reports on findings and themes from a Canadian study that investigated individualised funding projects from different parts of the world. Ten of fifteen of the most 'promising initiatives' were selected for more detailed study and analysis. Projects analysed were from Canada, the US, and Australia. Themes emerging from the study included the fact that values and principles mattered, a policy framework provided coherence and equity, infrastructure supports for individuals were separate from service system, the facilitator-broker role differed from case management, allocation of individualised funds was designed to be equitable and account able to the funder and person, and a 'learn as you go' philosophy maximised positive outcomes. This research project demonstrates that individualised support and funding, when embedded in the new paradigm of disability and community, builds capacity of individuals, families, and communities.     

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.     

The lived experience of students with an invisible disability at a Canadian university

University institutions are required by law to make their services accessible to students with disabilities. Canadian universities have gone a long way to eliminate the physical obstacles that present barriers for students. Many students with disabilities have invisible disabilities that require different types of adjustments. Although some researchers have evaluated the needs of students with disabilities in higher education, the unique needs of students with invisible disabilities have received less attention. The best means of assessing these needs is through direct consultation with students with disabilities. Thus, in-depth interviews were conducted with university students with dyslexia, attention-deficit hyperactivity disorder, and mental illness. Themes were developed that related to the nature of the disability, the accessibility of the university context, the social and organizational barriers, and recommendations for change. This research lends insight into how individuals with invisible disabilities believe that they are perceived within the university context.     

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.     

Israeli policy toward veterans with disabilities: a snapshot and insights of the proposed reform

The policy toward Israeli veterans with disabilities is based on the Invalids Law (Benefits and Rehabilitation) of 1949 . This legislation has served as the foundation for an intricate disability policy, providing benefits and psychosocial services for veterans with disabilities. Sixty two years later, in light of the emergence of a new social model and disability rights conceptualization, there is a need to reevaluate the current legislation and policy. In this article the authors present the essence of the current Israeli disability policy and explore the applications of a proposed reform aimed at adapting the disability policy and services to the new principles of the social model of disability.     

How do Spanish disability support offices contribute to inclusive education in the university?

This article analyzes the functioning of disability support offices and their contribution to inclusive education in seven Spanish universities from the perspective of staff. Using a qualitative methodology, interviews with office staff were conducted, and data were analyzed through an inductive coding system. The results are organized around five themes: characteristics of disability support offices, staff training, functions performed by different services, barriers and opportunities identified by office staff, and proposals to improve attention given to disabled students. Information gathered leads to the conclusion that the work carried out in disability support offices must receive support from universities, as these offices are a key element for the access and retention of students with disabilities in the university and for the successful completion of their studies.     

Families with Children with Disabilities - Inequalities and the Social Model

This article suggests that families with children with disabilities experience a range of inequalities that families with children without disabilities do not suffer. It draws on a recent qualitative study to illustrate the way in which it is not just disabled people, but in the case of disabled children, whole families that suffer from unequal opportunities and outcomes. We draw on the social model of disability to show that the lives of these families are often characterised by financial hardship, stress and anxiety as a result of social barriers, prejudices and poorly conceived service provision. The social model of disability is usually drawn upon to illustrate the way in which social organisation disables people with impairments. In this instance, we illustrate the way in which social organisation disables not just the family member who has an impairment but the whole family unit. By applying this model of disability, new ways of creating practices and policies for these families can be developed which incorporate their views into the heart of the policy-making process.     

Barriers and Facilitators of Responding to Problem Gambling: Perspectives from Australian Mental Health Services

Despite high rates of comorbidity between problem gambling and mental health disorders, few studies have examined barriers or facilitators to the implementation of screening for problem gambling in mental health services. This exploratory qualitative study identified key themes associated with screening in mental health services. Semi-structured interviews were undertaken with 30 clinicians and managers from 11 mental health services in Victoria, Australia. Major themes and subthemes were identified using qualitative content analysis. Six themes emerged including competing priorities, importance of routine screening, access to appropriate screening tools, resources, patient responsiveness and workforce development. Barriers to screening included a focus on immediate risk as well as gambling being often considered as a longer-term concern. Clinicians perceived problem gambling as a relatively rare condition, but did acknowledge the need for brief screening. Facilitators to screening were changes to system processes, such as identification of an appropriate brief screening instrument, mandating its use as part of routine screening, as well as funded workforce development activities in the identification and management of problem gambling.     

Open Road or Blind Alley? Welfare Reform, Mothers, and Children with Disabilities

Welfare reform was examined for 39 Michigan families whose children have significant health or intellectual and behavioral disabilities. As a group, these families received little specialized assistance or services to address their unique needs. Family-cited barriers to self-sufficiency included poorly trained welfare caseworkers, limited public transportation, and inadequate child care. Having an older child was the only discriminating variable between working and non-working mothers. However, working mothers only had temporary positions with no benefits and low pay. All families, whether employed or not, lived below the poverty line.     

Beneficiary Work: The Hidden Labor of Medicaid Users Pursuing Cross-State Moves

For users of Medicaid personal care assistance (PCA) services and their families, interstate variation in eligibility and service availability act as structural barriers to cross-state movement. However, program users desire and pursue cross-state moves. In this article, we provide a grounded theory analysis of 18 interviews with Medicaid PCA users with physical disabilities who expressed desire for or pursued cross-state moves. Our analysis identified six forms of previously unnamed and unrecognized work. As PCA users plan or pursue cross-state moves, they are also (1) assessing service ecosystems, (2) finding the right door, (3) persisting through the bureaucratic gauntlet, (4) advocating for systems cooperation, (5) reestablishing networks of support, and (6) responding to service gaps/lapses. Collectively, we describe this hidden labor as beneficiary work, the unremunerated work that program users must do in order to retain access to benefits for which they qualify. Beneficiary work, while hidden, is not optional; it is necessary for continued access to community and broadly, for survival. Identifying and describing beneficiary work expands on Feminist and interactionist perspectives on disability, poverty, and work, and highlights the need for changes to Medicaid policy that address PCA users as mobile citizens.     

In their own words: Overcoming barriers during the transition to adulthood for youth with disabilities who experienced foster care

The transition to adulthood can be especially challenging for youth who experience the foster care system. These challenges are magnified for youth with disabilities, who account for at least 40–47% of all children in foster care (Powers et al., 2012). In order to move from a deficit-based to a strength-based approach, this qualitative study focused on understanding the lived experience of transitioning to adulthood for alumni of foster care with disabilities. Semi-structured interviews were conducted with seven young adults who had exited care over a six-month time period. Participants described their journeys from foster care to independence and articulated a vision for a successful adulthood. Key themes that emerged included a desire for stability and personal fulfillment in adult life. Participants also identified common barriers encountered including unmet mental health needs and lack of disability awareness or the implications of mental health diagnosis. Personal strengths that helped overcome those barriers included resilience, advocacy, and self-determination.     

Of Pots of Gold and Pots of Glue: Society's Maltreatment of America's Poorest Children and Their Families

This article reports data from two qualitative studies with child welfare lowyers, judges, masters, and social workers (N = 59). Two themes emerged: the first is that child welfare involvement occurs within a broader societal context, and that child protective services and courts are called to address a broad range of concerns with severely inadequate resources. Participants saw that the paucity of resources as evidence of lack of societal concern for poor children and their families. They attribute lack of concern to ignorance of the circumstances faced by these vulnerable populations and to disregard due to their lack of political power.     

“They give you back that dignity”: understanding the intangible resources that make a transitional house a home for homeless families

Approximately 33% of the homeless population in 2017 were families with children. Researchers have argued for interventions and services to employ an ecological perspective to mitigate some of the unintentional harm inherent in existing programs designed to serve homeless families. This paper utilized a case study of a transitional housing program to (1) determine how well the program met recommendations informed by the ecological perspective and (2) explore underlying themes across recommendations. Past and current residents of a transitional housing program participated in semi-structured interviews as part of a program evaluation. Interviews were deductively and inductively coded to meet aims 1 and 2, respectively. Residents identified several aspects of the program that met the ecological perspective recommendations including culturally-responsive services, trauma-based services, and social and community connections. Major underlying themes spanning across recommendations included interpersonal resources (caring, sense of belonging), empowerment resources (advocacy, family preservation), impact on family (family life, positive youth development), and communication. This case study, through the analysis of residents’ perspectives, highlights the important role of transitional housing programs in providing a supportive, empathetic, empowering, and home-like environment that gives residents “back that dignity” so they are emotionally and physically prepared to successfully transition to permanent housing.     

Barriers preventing high-quality nursing care of people with disabilities within acute care settings: a thematic literature review

This literature review was conducted to identify obstacles in the provision of quality nursing care to people with disabilities within acute care settings. Research in 2006 by the Disability Rights Commission found that people with disabilities have healthcare needs that are not being adequately met with the quality of care expected or anticipated. Obstacles to the provision of high-quality nursing care are a matter of concern to nursing clinicians, educators and researchers involved with establishing and maintaining professional standards of care for nursing practice. Therefore, this review has identified three major themes illustrating barriers to provision of high-quality nursing care in the acute care setting to people with disabilities. Themes identified were: professional competence, professional attitudes and organisational management. Nurses have an obligation to take into account the concerns and needs of individual clients with a disability.     

Uncovering issues of ableism in social work education: a disability needs assessment

ABSTRACT

Social work education’s commitment to teaching inclusive social work practice must not only be evidenced in the explicit curriculum and teaching methods, it must also be present in the implicit curriculum including administrative policies, student support, and resources. Yet, accessibility and climate efforts often fall short of addressing disability and ableism as barriers to education, despite the clear call for disability to be included as part of the field of social work’s commitment to social justice. A social work graduate program in the USA developed a mixed-methods disability needs assessment, completed by 586 respondents in 2016. The assessment highlighted the frequency with which students experience ableist microaggressions and lack of support they feel they have, as well as the need for a disability-focused community within the school. Results illuminated the need for education on the depth and breadth of disabilities, advocacy, principles of Universal Design for Learning, and ableist microaggressions. These findings can assist social work educators in developing tangible strategies for more inclusive social work education.