In the care for people with intellectual disabilities in the Netherlands there is a growing emphasis on the relationship with relatives. The aim of this study is to explore the views of relatives ...regarding the quality of care and support for people with visual and intellectual disabilities. In this qualitative study twelve semi-structured interviews were conducted with relatives of people with visual and intellectual disabilities having experience with multiple group-homes of specialized care organizations. Analysis revealed seven overarching themes: 1) Be partners in care; 2) 'Know' the person with the disability; 3) Provide care from the heart; 4) Provide safety; 5) Provide opportunities for development; 6) Provide continuity in care; 7) Provide a 'home'. We conclude that the attitudes of care professionals are very important to provide good care and support, as seen from the perspective of relatives. For relatives, it is important to be acknowledged by the care professionals.
Points of interest
This article is about the viewpoint of relatives concerning the question: what is your understanding of good care and support for people with a visual and intellectual disability living in a group-home?
Relatives wish to be involved in the care that the person with disabilities needs and receives. They would like to be seen as partners of care professionals in providing care and support and wish to be contacted if choices or decisions are made.
It is important for people with a disability living in a group-home to be respected as a person by care professionals, to be able to learn new things, to receive structured care by familiar carers and to feel safe and at home in the group-home.
The findings from this study may serve as recommendations for care organizations and professionals.
This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning ...disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal-able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.
In recent times, observers have noticed that people with intellectual disability (ID) experience increasing complexity in their older age. Many initiatives launched by healthcare organisations and ...government bodies are rigorously working to improve ID people’s quality of life (QoL) and health status. The concept of QoL is rooted in a multidimensional framework comprising both universal (etic) and culture-bound (emic) components. It has objective and subjective features and is affected by individual and environmental factors. The professionals in QoL proposed eight dimensions to cover every aspect of ID people, including emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights. In the last decades in Catalonia, the professionals suggested the GENCAT scale predict these eight dimensions’ values through a set of questionnaires containing 69 questions. The professionals use the beneficiary’s response the heir to 69 questions based on four point frequency scale. The GENCAT scale tool converted these 69 questions’ answers into eight values corresponding to the eight QoL dimensions. The GENCAT tool uses a set of rules and some correlatable tables to evaluate the eight dimensions of each beneficiary. In this work, we propose using machine and deep learning-based models instead of the GENCAT tool to estimate the eight dimensions values. Based on the private Newton One dataset, we train various machine learning (ML), such as Random Forest and Decision Trees, along with Deep Neural Networks (DNNs) models to predict the eight dimension values. The trained models predict the eight values by feeding with the 69 questions responses of the beneficiaries. We evaluate the performance of the various models using the Mean Absolute Error (MAE), Root Mean Square Error (RMSE), and
R
2
scores. The proposed model based on DNNs achieved the best results among all tested models with MAE of 1.5991, RMSE of 3.0561, and
R
2
of 0.9565. The study shows the promise of the machine and deep learning-based models, particularly DNNs, as a more effective and precise substitute for the GENCAT scale for calculating the eight dimensions of QoL in people with ID. The results open the door for better QoL evaluations and individualised interventions to improve this population’s well-being as they age.
In most African countries, disability is explained by cultural beliefs. This has implications for healthcare delivery for persons with intellectual disabilities.
With the aid of a qualitative ...approach, we explore the interplay between cultural beliefs and the training of health professionals and their implications for the healthcare delivery to persons living with intellectual disabilities in the Asokwa and Oforikrom Municipalities.
Findings revealed that cultural beliefs about intellectually disabled people include the idea that their facilities are forbidden and that pregnant women who pass by them may have a child with a disability. Further, health professionals received little intellectual disability training. As a result, healthcare professionals lack knowledge of the needs and care of this group.
This study recommends that professionals should take comprehensive intellectual disability courses in training schools. Also, health professionals should attend periodic workshops on the range of intellectual disabilities to raise awareness of their needs and care.
Objective
The article presents research findings whose aim was to understand the lived experiences of fathers with intellectual disabilities referring to child protection proceedings they were ...involved in as fathers and the meanings ascribed to these experiences.
Background
Parents with intellectual disabilities face a high risk of having their children removed and being involved in child protection procedures. The overwhelming majority of studies focus on mothers. Little do we know about fathers' perspective.
Method
This study applies a qualitative approach, using in‐depth interviews and interpretative phenomenological analysis to explore the experiences of 14 fathers with intellectual disabilities who were involved in child protection procedures concerning their children. To allow a deeper understanding of the lived experience of the participants, it includes both fathers who lost custody of their children or were threatened with loss of custody.
Results
In the process of analysis, four main themes emerged: (a) adverse experiences, (b) a range of emotions—between despair and giving up, (c) lack of control, and (d) advocacy in promoting their own rights.
Conclusion
Fathers with intellectual disabilities reported being discriminated against on the basis of sex and disability in child protection procedures. Nonetheless, they were determined to fight for their parental rights.
Implications
It is important to focus on gender in research into parenting by people with intellectual disabilities. This will create an opportunity to learn about the needs and problems of mothers and fathers and to provide adequate support.
Disability Rhetoric is the first book to view rhetorical theory and history through the lens of disability studies. Traditionally, the body has been seen as, at best, a rhetorical distraction; at ...worst, those whose bodies do not conform to a narrow range of norms are disqualified from speaking. Yet, Dolmage argues that communication has always been obsessed with the meaning of the body and that bodily difference is always highly rhetorical. Following from this rewriting of rhetorical history, he outlines the development of a new theory, affirming the ideas that all communication is embodied, that the body plays a central role in all expression, and that greater attention to a range of bodies is therefore essential to a better understanding of rhetorical histories, theories, and possibilities.
This study aims to review the historical path of policies that have bring Spanish country to develop an advanced system of protection and integration of disabled people in its society. Through the ...analysis of the three fundamental general laws, we argue as the Spanish legal framework for disability – rooted in its Constitutional Chart- transposed at national and local level the major UN and EU supranational legislation in the matter. In addition, we get a look also on the main stakeholders that facilitate the access of disabled people to services provided by national and local government. Finally, appendix 1 and 2 exemplify concrete measures in terms of aids and benefits for disabled people and policies in the field of sport and physical activities for them respectively. In theoretical terms, the review shows that the actual Spanish legal system -and its services system- agrees with the internationally shared social paradigm of disability and overcame the rehabilitation or medical model in which rights and integration of disabled people were not fully acknowledged.
People with intellectual disability experience a high risk of being neglected and family members are often identified as the perpetrators. Analysing the media provides insight into public narratives ...about social problems. A search of Australian newspapers published between 2016 and 2021 identified 27 articles that predominately reported on a single case of familial neglect of an individual with intellectual disability. Using Foucauldian discourse analysis, 4 discourses and 3 subject positions were identified. The discourses include Criminal justice and law enforcement (perpetrator responsibility), Political (government responsibility), Medical (physical outcomes of neglect), and Graphic (gruesome details). The subject positions construct people with intellectual disability as different, vulnerable, and present limited consideration of suffering. This study centres on a single case providing an example of the harmful narratives presented by the Australian news media. The lack of news coverage hinders opportunities for people with intellectual disability to participate equally in society.
This paper considers current workforce issues facing psychological professionals working in NHS services, examining the challenges, and identifying opportunities to better meet the needs of autistic ...people and people with an intellectual disability (PwID) across the lifespan. The aim of this paper is to identify and publicly articulate the need for a coherent approach to guide the practice of psychological professionals when helping autistic people and/or PwID. It should be noted that the scope of the paper is limited to autism and intellectual disability. In addressing these broad groups and their co-occurring conditions and needs, we anticipate that many principles could be applied to other neurodevelopmental conditions. We also note the significant potential challenges in linking intellectual disability and autistic populations, hence have attempted – in drawing together a working group to write this paper – to ensure representation from a range of psychological professionals including those in policy, leadership, and training roles, those working in specialist or generic mental health services and undertaking clinical research across the lifespan. Objectives: ■ To help define and support clear action so that all sectors welcome and adequately support people with neurodevelopmental differences, including autistic people and/or PwID. ■ To play a role in the development, planning and evaluation of new psychological professions roles such as the Clinical Associates in Psychology (CAPS) and Education Mental Health Practitioners (EMHPs). ■ To reflect on the obstacles to recruiting to autism and learning disability services and to propose approaches to developing a sustainable psychological workforce in these areas. ■ To recognise where good examples of education and training programmes exist to address training, confidence and competence for all psychological professionals working with those who may be autistic and/or have an ID, and consider how to establish a more consistent approach to education, training and CPD across the workforce. ■ To engage in policy discussions around the current gaps, such as the demand for diagnostic assessments and support which significantly outstrips capacity, whilst highlighting unrealised opportunities, through for example, a systematic approach to training. ■ To advocate for the need for the voice of autistic people and PwID and their families/carers which is often absent from the design and offer of help.
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