Grass Roots Promotion of Community Health and Human Rights for People with Disabilities in Post-communist Central Europe: a profile of the Slovak Republic

Individuals living with a disability or chronic illness in post-communist Central and Eastern Europe face significant challenges to quality of life. The government-supported health care infrastructures in the post-communist countries of Central and Eastern Europe remain highly centralised and institutional, which poses particular obstacles to people with disabilities who wish to live independently in their communities. A partial solution to this difficulty has been the development of innovative grass roots organisations that provide community-based support to individuals with disabilities or chronic illness. These disability organisations provide services and advocacy that allow individuals to receive needed support outside of the biomedical institutions, facilitating independent living in the community. They do so, however, in a political and economic environment of immense change, and one with varying degrees of support for non-governmental organisa tions and a Civil Society. The following article profiles this grass roots development in one particularly interesting post-communist Central European country, the Slovak Republic.     

Effective Responses to Offenders with Intellectual Disabilities: Generalist and Specialist Services Working Together

Abstract

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.     

Tensions between institutional closure and deinstitutionalisation: what can be learned from Victoria’s institutional redevelopment?

Deinstitutionalisation must extend beyond the closure of institutions to individualised support to people with intellectual disabilities and societal change. Castellani suggests that closure processes may be incompatible with effective deinstitutionalisation. This article draws on findings from two Australian studies of institutional closures to explore tensions in the closure process that occur in the policy context of applying managerialist principles to the delivery of services, and examines how these processes hindered or furthered the aims of deinstitutionalisation. It suggests closure can divert attention from planning for individualised support, the needs of staff may conflict with those of residents, transition plans may be disrupted by organisational imperatives and that little attention may be paid to broader community development strategies or micro-level planning of the nature of staff support. The article reiterates the danger of equating institutional closure with deinstitutionalisation and the need to focus beyond the imperatives of closure.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

The successes and challenges of implementing individualised funding and supports for disabled people: an Irish perspective

‘Individualised funding’, which is rooted in the Independent Living Movement, has formed part of a global paradigm shift in support services for disabled people. Against the backdrop of international experience, a political system aligned with the United Kingdom and emergent critics of individualised funding, this article presents findings from an evaluation of four pilot programmes in Ireland. Exemplified by independent-skills development and community integration, these initiatives have been welcomed as a progressive development beyond traditional service provision, with perceived improvements across a range of organisational, personal, health and social care domains. The article explores the importance of ‘natural supports’ and how overly protective behaviour may unintentionally act as a barrier to full implementation. The findings also indicate that unnecessarily complex systems can lead to individual burn-out. Furthermore, a national resource allocation system working in partnership with existing social care professionals and the wider community is recommended, as is learning from overly simplified, group-based ideologies.     

Disability and participation in post-conflict situations: the case of Sierra Leone

This article describes four unexpected and spontaneous themes emerging from qualitative research based on the International Classification of Disability Functioning and Health, which took place in Sierra Leone, West Africa: the desire to live in a community of people with disabilities; the desire to be recognized as equal citizens and be given equal opportunities; the desire to become economically independent; and a high expectation of assistance. This article discuses the impact of these themes on two debates: the integration versus segregation of individuals and disability services, and the disability poverty cycle. The results of this study challenge non-governmental organizations to be aware of the Western norms and values of disability issues that are applied to the implementation of their programmes in low-income nations.     

Transition from school for youths with a disability: issues and challenges

Australian research has demonstrated that students with a disability are more likely to remain out of the full‐time workforce. These research findings have been the catalyst for a call for a comprehensive career development and transition planning approach for all students with disabilities in schools as well as for employers to rethink the role of people with disabilities in the workforce. In the Australian context the transition from school for individuals with a disability is complicated by a disparate and fragmented group of service agencies providing a range of services, including employment, supported accommodation, recreation and leisure pursuits, as well as training and placement, along with, at times, a deep‐seated prejudice towards people with disabilities in the market place. This paper reviews a number of issues and challenges confronting individuals with a disability making the transition from school to the post‐school environment.     

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.     

Understanding views of disability in the Cote d’Ivoire

While there are several international initiatives advocating for rights of individuals with disabilities in their community, many African countries lag behind in taking any actions. This is an ethnographic study conducted in Abidjan, Cote d’Ivoire in West Africa, and examines the current programs and services for children with disabilities, and views of disability among the public. It utilizes individual and group interviews, field observations, surveys and examination of governmental documents. There are tremendous needs and shortcomings regarding disability programs. This might be due not only to a lack of resources but to the views of disabilities held by society.     

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.     

The Effect of Social Work Education and Self-Esteem on Students' Social Discrimination of People with Disabilities

Social work education on disability content has become more important due to political changes in the last two decades. The United States protected people with disabilities from discrimination in community and employment settings with the enactment of the Americans with Disabilities Act of 1990. These changes have empowered people with disabilities to become more independent; however, social workers primarily fulfill roles as case managers, and often make decisions for people with disabilities. This is not consistent with the empowerment perspective embedded in the disability movement. Most social work schools have minimal courses covering disability content. Previous research and the Self-Esteem Hypothesis indicate that social work education, social proximity to people with disabilities, self-esteem and other demographic characteristics are associated with social discrimination, or attitudes, toward people with disabilities. Social work students (n = 73) participated in a survey in the last semester of their program to assess how these characteristics were associated with their attitudes towards people with disabilities. A multiple linear regression revealed that social work education preparedness to work with people with disabilities, an MSW education, self-esteem, and having a friend with a disability were significantly associated with students' social discrimination towards people with disabilities.     

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.     

‘The seal of approval’: referring adults with intellectual disabilities and challenging behaviour to community learning disability teams

This article describes a study that involved interviewing eight managers of residential services, who have made referrals to community learning disability teams (CLDTs) for challenging behaviour. Thematic analysis and a critical perspective are combined to analyse and interpret what referrers said about the process of the referral. The study found that managers referred people with intellectual disabilities to the CLDT primarily in order to manage organisational problems rather than to directly manage challenging behaviour. The referrals enlisted the services of professionals to legitimise the residential services, to confirm their practices and to provide credibility to existing decisions by managers. In referring a man or woman with intellectual disabilities to the CLDT, the managers submit themselves, their staff and the person with the intellectual disabilities to the power of the health and psy-complex professionals.     

Community orientation of services for persons with a psychiatric disability. Comparison between Estonia,Hungary and the Netherlands

This article explores the way mental health services and social services are orientated on assisting people with a psychiatric disability to participate in different areas of community life. A large research project about community participation in three different countries (Estonia, Hungary and the Netherlands) confirms the findings of other studies that – regardless of geographical location – people with a psychiatric disability have difficulty fulfilling social roles in the community. They are often faced with fewer opportunities than other citizens, due to their health problems, stigma, discrimination and poverty [World Health Organisation. (2011). World report on disability. Geneva: WHO]. An important objective of social work is to help people find their way in society. Surprisingly enough, in all three countries, most social workers are mainly focused on solving individual problems, and not on community participation. Shifting the focus starts by having a clear awareness of the notion of community participation. Social workers have to work both on supporting individuals to find their way in the community (individual support), and on supporting social networks in the community to accommodate persons with a disability on the basis of equal and valued citizenship (community support).     

Franklin D. Roosevelt's Shangri-La: foreshadowing the Independent Living Movement in Warm Springs, Georgia, 1926-1945

American President Franklin Delano Roosevelt is well known to have disguised and minimized his disability in his role as a political leader. Less well known is the remarkable nature of the colony he established for people with disabilities from polio in Warm Springs, Georgia in the 1920s, 1930s and 1940s. The colony at Warm Springs represents a unique historical community in which disability was not stigmatized; where people with disabilities controlled their own resources and their own lives; and where the medical model of disability was repudiated. As such, the Warm Springs community represents a remarkable period and place in disability history that warrants continued study. New evidence drawn from the archives of the Roosevelt Warm Springs Institute for Rehabilitation, the FDR Presidential Library in Hyde Park, New York and the personal scrapbooks of former residents of the Warm Springs colony provides further support for the theory that FDR's Warm Springs colony represented an early precursor to the philosophies and values promoted by the Independent Living Movement that emerged 50 years later. The Warm Springs colony offered an unprecedented approach to rehabilitation and independent living for people with disabilities from polio in the 1920s, 1930s and 1940s, and because of this provides an invaluable lesson from history that deserves ongoing attention.     

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

ABSTRACT

Family members are a key source of services and supports for people with disabilities across the life course, helping people to remain living at home and in the community. As part of an effort to generate a strategic plan for research on family caregiver experiences and supports, this issue includes four literature reviews on the current state of research, each specific to a life course stage. This introduction presents a framework that combines life course and ecological perspectives to organize the existing literature of family caregiver support and to identify gaps in existing research, as well as opportunities for future investigations.     

The Woodwork Effect in Medicaid Long-Term Services and Supports

This paper examines annual real per capita Medicaid long-term services and supports (LTSS) expenditures (in 2010 $) over the period 1995 to 2010. Medicaid community LTSS expenditures increased substantially. If that trend constituted a woodwork effect, expenditures on institutional services should have declined more slowly than community expenditures increased, resulting in total expenditures increasing over time. Such a woodwork effect is observed for the population with intellectual and developmental disabilities (IDD) but not for the non-IDD population, composed of persons with disabilities other than IDD, including older persons. During this time period, the goals for serving people with IDD changed; institutional and community cost-neutrality rules were relaxed (and with that concerns over a woodwork effect), and instead goals of community involvement and participation were emphasized for all eligible persons. For the non-IDD population, tighter adherence to cost-neutrality rules and controls over nursing home reimbursements may have helped avoid a woodwork effect as community expenditures increased. With the passage of the Americans with Disabilities Act in 1990, goals have changed for people with disabilities of all ages, and the notion of a simple trade-off between institutional and community service costs that constitutes the woodwork effect must be complemented with a much broader idea of cost analysis that values independence and community participation for people with disabilities of all ages.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Research and Disability in a Local Community

This paper describes a study of the experience of disability in a local community. The study unfolded within a carefully constructed and collaborative framework, so that the people in whose interests the study was focused could inform its process, and take opportunities to benefit from it and each other. Outcomes included the establishment of a local support group, a family support project involving the University and the local community, and considerably developed understandings of neighbourhood support and the experiences of disability, most specifically from the point of view of carers. Finally, a model of community support service was proposed. In conclusion, the paper highlights the processes of local collaboration and research. It describes research in which the actions taken and proposed to improve local supports were informed by the ongoing processes of research, and in turn the research process itself was informed by the local experiences of participants.     

Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.