Living on a knife edge: the responses of people with physical health conditions to changes in disability benefits

Abstract

This article documents the experiences of people with a physical health condition or disability who have experienced a loss of or change in disability benefits under the welfare reform programme in the United Kingdom. A theoretical model was constructed using in-depth interviews and grounded theory methods. The findings show that participants experienced the benefits system as dehumanising, and felt that they lived in a judgemental and invalidating society, where they were perceived as ‘scroungers’ and faced discrimination from others. These experiences negatively affected their mental and physical health and well-being. They also negatively affected participants’ identity, leading to experiences of shame, hopelessness and social isolation. However, many participants attempted to resist these negative impacts (e.g. through seeking support or taking political action). The findings demonstrate the significant impact of benefit changes on well-being and identity, thus highlighting important implications for claimants, and staff in healthcare, the benefits system and government.     

Disability Services and College Students with Psychiatric Disabilities

Abstract

Weiner (1999) has suggested that the process of accepting a disability and its associated limitations is often protracted for students with psychiatric disabilities, thus leaving many students unable to fully participate in services or in the design of academic accommodations. This research examines the relationship between psychiatric disability identity and use of academic accommodation services for 57 undergraduates with psychiatric impairments who are experiencing problems in their academic functioning. Willingness to utilize services was related to students' identification as having a psychiatric disability. Social work interventions are needed to support students in accepting psychiatric disabilities while concurrently crafting necessary accommodations.     

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.     

Disability studies as a framework to design disability awareness programs: no need for ‘magic’ to facilitate children’s understanding

Abstract

This paper presents and critically discusses a disability awareness program that was addressed to non-disabled children aged between 6-8 years old in Cyprus. The main aims were to explore how disability studies and anti-oppressive pedagogies could inform decisions on structured activities and materials to support children understand disability as condition of life, and recognize disabling practices. Artefacts from children’s work and narratives are presented throughout the paper to inform decisions and choices in relation to the program. The discussion draws on international literature and critically examines: a. how disability feminists’ focus on experiences of disability can have a central place in awareness raising programs, and can be further strengthened by a social model understanding of disability, b. the local context and the use of language as raised by postmodernists/poststructuralists, and c. the use of cartoons as a form of art that can help recognize and challenge dominant disability stereotypes.     

Remaining home: Well-being outcomes and co-occurring parental substance use following a maltreatment investigation in middle childhood

PurposeThe purpose of the study is to understand differences in child well-being related to parental substance use among children ages 6–12 who were investigated for maltreatment but not removed from their homes. Children with a substance-using parent in the home are compared to those without a substance-using parent in the home.MethodsLongitudinal data from waves 1 and 3 of the second National Study of Child and Adolescent Well-Being (NSCAW II) are used. NSCAW II is a national sample of families with children and youth aged birth to 17.5 investigated by child protective services (CPS). A subset of the data (analyzed with domain analysis methods) is used for this study (n = 575). Eight well-being outcomes from four domains (cognitive development, physical health, psychological/behavioral development and social/emotional competence) are analyzed.FindingsWe hypothesized that (among children investigated for maltreatment and not removed from home) children whose parents used substances would exhibit lower mean levels of well-being at thirty-six months follow-up compared to those whose parents did not use. Unexpectedly, we found no significant differences in well-being levels between children with parents in the home using substances and those without.ConclusionsChildren with substance-using parents may be able to remain at home over an extended period after investigation, while maintaining well-being levels similar to children at home with parents not using substances. If an effective safety plan can be put in place, this option may provide a path to maintaining safety, permanency and well-being for such children without placement in out-of-home care.     

Sibling Roles in the Lives of Older Group Home Residents with Intellectual Disability: Working with Staff to Safeguard Wellbeing

Abstract

When parents die, siblings of older people with intellectual disability are likely to take responsibility for oversight of their wellbeing and negotiation with formal support services. This study explored the roles siblings played in the lives of older people with intellectual disability who live in group homes, and the relationships between residents’ siblings and group home staff. The siblings of 13 group home residents and the 17 supervisory staff associated with these services were interviewed, initially face-to-face and then intermittently by phone over a period of three years. Data were analysed using an inductive analytical approach. Siblings valued the relationship with their brother or sister with intellectual disability and played a significant role in safeguarding their wellbeing. Sibling–staff relationships fluctuated over time, sometimes becoming tense and difficult. Few protocols guided these relationships. A principle-based framework could facilitate negotiation between staff and siblings about expectations of communication and decision making.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

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.     

Latino Families with a Child with Prader–Willi Syndrome: Exploring Needs for Support

Prader–Willi syndrome (PWS) is a complex, genetically based disorder; caring for a family member with a disability such as PWS brings significant challenges to the whole family. However, no research has been conducted focusing on the impact of PWS in the dynamics of Latino families. This qualitative study explored the challenges and need for support services among Latino families of children with PWS. Findings of the study suggest the need for support services geared toward the whole family unit to help members cope with daily challenges at home.     

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.     

Learning Disabilities Within Postsecondary Education

Abstract

Learning disabilities (LD) are a significant issue in the U.S. educational system and the fastest growing disability group in need of services at the postsecondary educational level. This growth has led to an increase in colleges and universities offering support services to the adult LD population. However, many students are still having difficulty remaining in college and completing degree programs. This difficulty may arise, in part, from confusion and misunderstanding among postsecondary professionals, including disability support coordinators and professors. The purpose of this article is to address some of the issues postsecondary educational staff and faculty members come across when dealing with the adult learning disabled population.     

Investigating feasibility and fidelity of the Parenting Young Children program in Sweden

Specific aimsThis study explored feasibility and fidelity of an education program for parents with intellectual disability. The Australian Parenting Young Children intervention was translated and adapted for support workers in the Swedish social services.MethodFidelity was examined using implementation diaries tracking frequency of implementation of program activities and teaching approaches ((over 14 months, completed by 27 support workers from 15 municipalities). Eighteen of these support workers and their managers (n = 12) completed questionnaires examining feasibility using Roger’s concepts of program compatibility and complexity.FindingsResults showed that implementation of Parenting Young Children was feasible, with overall positive attitudes to Evidence Based Practice, good program compatibility, low perceived program complexity, and high satisfaction with implementation support. The fidelity measures suggest problems in how the program is used by some support workers: parents received less than the recommended number of sessions and activities such as observation of parents and follow up, were infrequently used by support workers.DiscussionThe findings raise questions about how program support and education should be provided. Difficulties in defining fidelity within the flexibility of the Parenting Young Children program are also discussed.     

Mental health services for children and caregivers remaining at home after suspected maltreatment

ObjectiveBehavioral problems are common among children remaining at home after suspected maltreatment, but the effectiveness of current mental health services to improve these behavioral problems is unknown. The objective was to determine whether receipt of child and caregiver mental health services was associated with improvements in behavioral problems in maltreated children remaining at home.MethodsWe retrospectively analyzed Second National Survey of Child and Adolescent Well-being data. We included 1117 children ages 2–17 remaining at home after a maltreatment investigation, excluding children with missing outcome, covariate, or survey weight data. We compared mean Child Behavioral Checklist (CBCL) change scores from baseline to 18 months between children who did and did not receive mental health services, before and after adjusting for child, caregiver, and child welfare agency factors using survey-weighted linear regression.ResultsNearly one-quarter (22.6%) of children and 16.0% of caregivers received mental health services. Children receiving services had worse unadjusted baseline and 18-month CBCL scores than children not receiving services (all P < 0.001). Adjusted CBCL change scores revealed behavioral worsening among children receiving services but improvement among children not receiving services (all P < 0.001). However, children had improved behavior, regardless of their own service receipt, if their caregivers received services and reported an absence of depression at 18 months.ConclusionsChildren receiving mental health services had worse behavioral changes than children not receiving services. Caregiver receipt of services was associated with improved child behavior, suggesting that a family-centered approach may be most influential in improving behavioral outcomes among this population.     

Promoting birth parents' relationships with their toddlers upon reunification: Results from Promoting First Relationships® home visiting program

Birth parents, once reunified with their child after a foster care placement, are in need of in-home support services to prevent reoccurrence of maltreatment and reentry into foster care, establish a strong relationship with their child, and enhance child well-being. Few studies have addressed the efficacy of home visiting services for reunified birth parents of toddlers. This study reports on the findings from a randomized control trial of a 10-week home visiting program, Promoting First Relationships® (Kelly, Sandoval, Zuckerman, & Buehlman, 2008), for a subsample of 43 reunified birth parents that were part of the larger trial. We describe how the elements of the intervention align with the needs of parents and children in child welfare. Although the sample size was small and most of the estimates of intervention effects were not statistically significant, the effect sizes and the pattern of results suggest that the intervention may have improved both observed parenting sensitivity and observed child behaviors as well as decreased parent report of child behavior problems. Implications are that providing in-home services soon after a reunification may be efficacious in strengthening birth parents' capacity to respond sensitively to their children as well as improving child social and emotional outcomes and well-being.     

Hmong Americans' Changing Views and Approaches Towards Disability

ABSTRACT

This article discusses how the concept of disability has evolved among Hmong Americans. The term disability has its unique cultural roots in Hmong traditions. Findings from a study of a sample of Hmong Americans in Northern California confirm the changing Hmong Americans' views on the issue of disability and their use of shaman. Families, community leaders, and shaman continue to be the primary support network and sources of consultation for many Hmong Americans.     

Quirky kids: fathers’ stories of embracing diversity and dismantling expectations for normative play with their children with autism spectrum disorder

Abstract

Anchored in critical disability studies, we used a narrative methodology to study fathers’ stories of play interactions with their children with autism spectrum disorder (ASD). Three narratives convey how father–child interactions unfold and how patterns of interaction respond to, redefine and resist societal norms. Narratives of action demonstrate fathers’ responses to societal norms, while narratives of adjustment depict how fathers have redefined expectations of their children in the context of play. Narratives of acceptance demonstrate fathers’ attunement to, and acceptance of, their children’s preferred play interests and a resistance to play norms. We argue that fathers’ stories represent a step towards emancipating play for children with ASD in that fathers’ appreciation of their children’s quirky play accentuates the relational and social capabilities of children, thus countering deficit interpretations of the abilities of children with autism more broadly.     

The impact of para-professional social workers and community health care workers in Côte d'Ivoire: Contributions to the protection and social support of vulnerable children in a resource poor country

BackgroundResearch indicates a disproportionate impact of HIV and AIDS in sub-Saharan African countries, leading to many vulnerable families and children. Many of these communities have limited resources to support these vulnerable families, especially orphans and vulnerable children (OVC).Study aims and objectiveThis study set out to investigate how para-professional social workers and community health workers (PSWCHW) impact the provision of services and the psychosocial wellbeing and protection of vulnerable children in the community.MethodsThis quasi-experimental research study used data from an independent Save the Children program evaluation study in Côte d'Ivoire. We compared the health and psychosocial wellbeing of identified vulnerable children supported by para-professionals (n = 334) and children not receiving para-professional support (n = 213).FindingsSupport services and activities provided by PSWCHW included encouraging the children to be part of psychosocial support groups. Many of the children reported legal issues that ranged from getting a birth certificate issued to fighting or quarrelling with adults, disputes, public insults, beatings, and refusing to go to school. We found that the engagement of PSWCHW helped three out of four children go to school (compared to only one in four of the children without PSWCHW). PSWCHW also helped the children improve access to health care services.ConclusionsCommunities in sub-Saharan Africa should continue to consider the integrated utilization of para-professional social workers and community health care workers to support and improve psychosocial wellbeing of orphaned and vulnerable children which, in turn, enhances child protection services and access to healthcare.     

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.     

Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.