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Persons with profound intellectual disability and their right to sex

VEHMAS, Simo
2019

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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Assistive technology products: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit

SMITH, Roger O
SCHERER, Marcia J
COOPER, Rory
BELL, Diane
HOBBS, David A
PETTERSSON, Cecilia
SEYMOUR, Nicky
BORG, Johan
JOHNSON, Michelle J
LANE, Joseph P
SUJATHA, S
RAO, PVM
OBIEDAT, Qussai M
MACLACHLAN, Malcolm
BAUER, Stephen
2018

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This paper is based on work from the Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit that was coordinated by WHO’s Global Cooperation on Assistive Technology (GATE). The purpose of this paper is to describe the needs and opportunities embedded in the assistive product lifecycle as well as issues relating to the various stages of assistive product mobilization worldwide.

The paper discusses assistive technology product terminology and the dangers of focusing on products outside the context and rolling out products without a plan. Additionally, the paper reviews concepts and issues around technology transfer, particularly in relation to meeting global needs and among countries with limited resources. Several opportunities are highlighted including technology advancement and the world nearing a state of readiness through a developing capacity of nations across the world to successfully adopt and support the assistive technology products and applications.

The paper is optimistic about the future of assistive technology products reaching the people that can use it the most and the excitement across large and small nations in increasing their own capacities for implementing assistive technology. This is expressed as hope in future students as they innovate and in modern engineering that will enable assistive technology to pervade all corners of current and potential marketplaces. Importantly, the paper poses numerous topics where discussions are just superficially opened. The hope is that a set of sequels will follow to continue this critical dialog.

Assistive technology provision: towards an international framework for assuring availability and accessibility of affordable high-quality assistive technology

DE WITTE, Luc
STEEL, Emily
GUPTA, Shivani
RAMOS, Vinicius Delgado
ROENTGEN, Uta
2018

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Purpose: This is a position paper describing the elements of an international framework for assistive technology provision that could guide the development of policies, systems and service delivery procedures across the world. It describes general requirements, quality criteria and possible approaches that may help to enhance the accessibility of affordable and high quality assistive technology solutions.

 

Materials and methods: The paper is based on the experience of the authors, an analysis of the existing literature and the inputs from many colleagues in the field of assistive technology provision. It includes the results of discussions of an earlier version of the paper during an international conference on the topic in August 2017.

 

Results and conclusion: The paper ends with the recommendation to develop an international standard for assistive technology provision. Such a standard can have a major impact on the accessibility of AT for people with disabilities. The paper outlines some the key elements to be included in a standard.

From individual innovation to global impact: the Global Cooperation on Assistive Technology (GATE) innovation snapshot as a method for sharing and scaling

LAYTON, Natasha
MURPHY, Caitlin
BELL, Diane
2018

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Assistive technology (AT) is an essential facilitator of independence and participation, both for people living with the effects of disability and/or non-communicable disease, as well as people aging with resultant functional decline. The World Health Organization (WHO) recognizes the substantial gap between the need for and provision of AT and is leading change through the Global Cooperation on Assistive Technology (GATE) initiative. Showcasing innovations gathered from 92 global researchers, innovators, users and educators of AT through the WHO GREAT Summit, this article provides an analysis of ideas and actions on a range of dimensions in order to provide a global overview of AT innovation. The accessible method used to capture and showcase this data is presented and critiqued, concluding that “innovation snapshots” are a rapid and concise strategy to capture and showcase AT innovation and to foster global collaboration.

Systems thinking for assistive technology: a commentary on the GREAT summit

MACLACHLAN, Malcolm
SCHERER, Marcia J
2018

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The area of assistive technology has a long history of technological ingenuity and innovation. In order to ensure that the benefits of assistive technology are equitably distributed across the population and life course, it is necessary to adopt a systemic approach to the area. We describe examples of systems thinking and non-systems thinking across 10 Ps. These Ps are People (or users, as the primary beneficiaries of assistive technology), Policy, Products, Personnel, Provision (as key strategic drivers at systems level); and Procurement, Place, Pace, Promotion and Partnership (as key situational factors for systems). Together these Ps should constitute a framework for an “open” system that can evolve and adapt, that empowers users, inter-connects key components and locates these in the reality of differing contexts. The adoption of a stronger systems thinking perspective within the assistive technology field should allow for more equitable, more resilient and more sustainable assistive technology across high, middle- and low-income contexts and countries.

Assistive technology and people: a position paper from the first global research, innovation and education on assistive technology (GREAT) summit

DESMOND, Deirdre
LAYTON, Natasha
BENTLEY, Jacob
BOOT, Fleur Heleen
BORG, Johan
DHUNGANA, Bishnu Maya
GALLAGHER, Pamela
GITLOW, Lynn
GOWRAN, Rosemary Joan
GROCE, Nora
MAVROU, Katerina
MACKEOGH, Trish
MCDONALD, Rachael
PETTERSSON, Cecilia
SCHERER, Marcia J
2018

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Assistive technology (AT) is a powerful enabler of participation. The World Health Organization’s Global Collaboration on Assistive Technology (GATE) programme is actively working towards access to assistive technology for all. Developed through collaborative work as a part of the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit, this position paper provides a “state of the science” view of AT users, conceptualized as “People” within the set of GATE strategic “P”s. People are at the core of policy, products, personnel and provision. AT is an interface between the person and the life they would like to lead. People’s preferences, perspectives and goals are fundamental to defining and determining the success of AT. Maximizing the impact of AT in enabling participation requires an individualized and holistic understanding of the value and meaning of AT for the individual, taking a universal model perspective, focusing on the person, in context, and then considering the condition and/or the technology. This paper aims to situate and emphasize people at the centre of AT systems: we highlight personal meanings and perspectives on AT use and consider the role of advocacy, empowerment and co-design in developing and driving AT processes.

Enabling appropriate personnel skill-mix for progressive realization of equitable access to assistive technology

SMITH, Emma M
GOWRAN, Rosemary Joan
MANNAN, Hasheem
DONNELLY, Brian
ALVAREZ, Liliana
BELL, Diane
CONTEPOMI, Silvana
ENNION (WEGNER), Liezel
HOOGERWERF, Evert-Jan
HOWE, Tracey
JAN, Yih-Kuen
KAGWIZA, Jeanne
LAYTON, Natasha
LEDGERD, Ritchard
MACLACHLAN, Malcolm
OGGERO, Giulia
PETTERSSON, Cecilia
POUSADA, Thais
SCHEFFLER, Elsje
WU, Sam
2018

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Background and Methods: This paper reviews the current capacity of personnel in enabling access to assistive technology (AT) as well as the systems and processes within which they work, and was reviewed, discussed, and refined during and following the Global Research, Innovation, and Education in Assistive Technology (GREAT) Summit.

 

Findings: Key concepts addressed include a person-centred team approach; sustainability indicators to monitor, measure, and respond to needs for service design and delivery; education, research, and training for competent practice, using the six rehab-workforce challenges framework; and credentialing frameworks. We propose development of a competence framework and associated education and training programs, and development and implementation of a certification framework for AT personnel.

 

Conclusions: There is a resolve to address the challenges faced by People globally to access assistive technology. Context specific needs assessment is required to understand the AT Personnel landscape, to shape and strengthen credentialing frameworks through competencies and certification, acknowledging both general and specific skill mix requirements.

Compliance with standards of practice for health-related rehabilitation in low and middle-income settings: development and implementation of a novel scoring method

PRYOR, Wesley
NEWAR, Pushpak
RETIS, Chiara
URSEAU, Isabelle
April 2018

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Purpose: To (A) develop a method for measuring compliance with standards, and (B) implementation of the method in 12 rehabilitation centers in six low and middle-income countries (LMICs).

 

Methods: In part A, existing standards were compiled and operationalized into scores, organized into 5 ‘scorecards’ and 15 ‘sub-scorecards’, then tested and refined in an iterative process. In part B, 12 rehabilitation centers in 6 countries implemented the standards using the new method, revealing relative performance between centers, and across different standards. Internal consistency of scores within domains was computed using Chronbach’s alpha.

 

Results: A standardized method for scoring compliance with standards for rehabilitation was developed. The method evaluated compliance with standards in five domains of practice: user focused approach, service outputs, finances, staff, and general management. Multiple standards within domains were strongly related, with Chronbach’s alpha >0.80 for all but the equipment and supplies domain. Overall, in the 12 rehabilitation centers examined, 36% of standards were met or exceeded. Compliance within each scoring domain was 56% (user-focused approach), 38% (service outputs), 27% (financial management), 30% (staff management), and 33% (general management). Two out of 12 (17%) of centers met more than two-thirds of the standards, 3 (25%) met more than one-third of standards, while the remaining 7 (58%) met less than one-third of standards.

 

Conclusions: A new, standardized method for measuring performance of rehabilitation services in LMICs was developed. The method examines standards in five rehabilitation practice domains, and can be used to understand barriers to quality performance, particularly in resource-constrained settings. Implementation of the method demonstrated that current compliance with standards is modest. Ongoing interest in new standards for rehabilitation practice should be accompanied by measures to ensure they are used to strengthen quality in an emerging rehabilitation sector.

Assistive technology policy: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit

MACLACHLAN, Malcolm
BANES, David
BELL, Diane
BORG, Johan
DONNELLY, Brian
FEMBEK, Michael
GHOSH, Ritu
GOWRAN, Rosemary Joan
HANNAY, Emma
HISCOCK, Diana
HOOGERWERF, Evert-Jan
HOWE, Tracey
KOHLER, Friedbert
LAYTON, Natasha
LONG, Siobhán
MANNAN, Hasheem
MJI, Gubela
ONGOLO, Thomas Odera
PERRY, Katherine
PETTERSSON, Cecilia
POWER, Jessica
RAMOS, Vinicius Delgado
SLEPIČKOVÁ, Lenka
SMITH, Emma M
TAY-TEO, Kiu
GEISER, Priscille
HOOKS, Hilary
2018

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Increased awareness, interest and use of assistive technology (AT) presents substantial opportunities for many citizens to become, or continue being, meaningful participants in society. However, there is a significant shortfall between the need for and provision of AT, and this is patterned by a range of social, demographic and structural factors. To seize the opportunity that assistive technology offers, regional, national and sub-national assistive technology policies are urgently required. This paper was developed for and through discussion at the Global Research, Innovation and Education on Assistive Technology (GREAT) Summit; organized under the auspices of the World Health Organization’s Global Collaboration on Assistive Technology (GATE) program. It outlines some of the key principles that AT polices should address and recognizes that AT policy should be tailored to the realities of the contexts and resources available. AT policy should be developed as a part of the evolution of related policy across a number of different sectors and should have clear and direct links to AT as mediators and moderators for achieving the Sustainable Development Goals. The consultation process, development and implementation of policy should be fully inclusive of AT users, and their representative organizations, be across the lifespan, and imbued with a strong systems-thinking ethos. Six barriers are identified which funnel and diminish access to AT and are addressed systematically within this paper. We illustrate an example of good practice through a case study of AT services in Norway, and we note the challenges experienced in less well-resourced settings. A number of economic factors relating to AT and economic arguments for promoting AT use are also discussed. To address policy-development the importance of active citizenship and advocacy, the need to find mechanisms to scale up good community practices to a higher level, and the importance of political engagement for the policy process, are highlighted. Policy should be evidence-informed and allowed for evidence-making; however, it is important to account for other factors within the given context in order for policy to be practical, authentic and actionable.

Feeling disability: theories of affect and critical disability studies

GOODLEY, Dan
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2017

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This paper explores connections between affect studies and critical disability studies. Our interest in affect is sparked by the beginnings of a new research project that seeks to illuminate the lives, hopes and desires of young people with ‘life-limiting’ or ‘life-threatening’ impairments. Cultural responses to these young people are shaped by dominant discourses associated with lives lived well and long. Before commencing our empirical work with young people we use this paper to think through how we might conceptualise affect and disability. We present three themes; ontological invalidation in neoliberal-able times; affect aliens and crip killjoys; disability and resistant assemblages.

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Educational inclusion and critical neuroscience: friends or foes?

BILLINGTON, Tom
2017

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Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Disability and social justice

MLADENOV, Teodor
2016

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This article explores the significance of disability for social justice, using Nancy Fraser’s theory of justice as a guideline. The article argues that the disability perspective is essential for understanding and promoting social justice, although it is often disregarded by critical thinkers and social activists. The article looks at three prominent strategies for achieving social justice under conditions of capitalism: economically, by decommodifying labour; culturally, by deconstructing self-sufficiency; and politically, by transnationalising democracy. The disability perspective reveals that decommodification of labour requires enhancement of disability support, deconstruction of self-sufficiency requires valorisation of disability-illuminated interdependence, and transnationalisation of democracy requires scrutiny of the transnational production of impairments. The article discusses each of these strategies in theoretical and practical terms by drawing on disability studies and Fraser’s analyses.

Community-Based Rehabilitation Services in Low and Middle-Income Countries in the Asia-Pacific Region: Successes and Challenges in the Implementation of the CBR Matrix

Cayetano, Roi Dennis Adela
Elkins, Jeananne
2016

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Purpose: This literature review aims to explore the importance of physical therapy services and the increasing awareness of CBR, specifically related to challenges in its implementation in low and middle-income countries in the Asia-Pacific region.

 

Method: A literature review of multiple databases was conducted to locate relevant articles written within the past five years. The databases used for the search were Google Scholar, Cochrane Library, CINAHL, and PubMed.

 

Results: Thirteen articles about CBR were included in the literature review. These consist of studies on the quality of life, access to healthcare services, and barriers to CBR, as well as about the impact of CBR to LMICs and stakeholders. The articles demonstrate the vast potential of CBR, especially in LMICs in the Asia-Pacific region, with a significant positive impact on the lives of people with disabilities.

 

Conclusion: CBR has improved the quality of life, access to medical services, functional independence, autonomy, community inclusion, and empowerment of people with disabilities in LMICs in the Asia-Pacific region. However, challenges in the implementation of CBR remain. These include lack of awareness and understanding of CBR, and physical, environmental, socio-economical and personal barriers.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

Development of a contextually appropriate, reliable and valid basic Wheelchair Service Provision Test

GARTZ, Rachel
GOLDBERG, Mary
MILES, Alexandria
MILES, Rory
PEARLMAN, Jon
SCHMELER, Mark
BITTMAN, Sarah Jonassen
HALE, Judith
2016

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Purpose:

Currently, there is no internationally accepted way to measure the competency of wheelchair service professionals. The International Society of Wheelchair Professionals aims to develop a Wheelchair Service Provision – Basic Test as a preliminary step towards establishing a certification process. 

 

Method:

A team of wheelchair service provision experts developed test questions and conducted alpha and beta testing in order to validate them. Low-performing test items were eliminated. A pilot test was then conducted, which focused on developing a pass score, determining language barriers and validating the test as a measure of competency. 

 

Results:

90 participants completed one of three versions of the Wheelchair Service Provision – Basic Test. A pass score of 70% was established and 135 questions were accepted for the final test. Analysis of variance indicated there was a difference in scores based on language (p = 0.001), but not based on experience level. This result motivated translation in to the United Nations’ official languages.

 

Conclusions:

The results indicate that the Wheelchair Service Provision – Basic Test is a valid method for measuring basic competency of wheelchair professionals. Additionally, researchers recommend a skills assessment to help to ensure only qualified wheelchair professionals receive the certificate.

Bridging the disability divide through digital technologies

Deepti Samant Raja
2016

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The exclusion and marginalization of persons with disabilities is a human rights issue as well as an economic issue for countries. Digital technologies break traditional barriers to communication, interaction, and access to information for persons with disabilities. The confluence of increasing public and private service provision through Information and Communication Technology (ICT) and the growing number of mainstream, everyday ICTs that can be used as accessible devices is changing the paradigm of technology-enabled development for persons with disabilities. This paper provides an overview of the opportunities presented by the internet and ICT for the full participation of persons with disabilities. Accessible ICT can level the playing field for persons with disabilities across life domains including education, employment, e-governance and civic participation, financial inclusion, and disaster management. However, earlier divides may persist and new divides may be created when ICT-enabled development is not accessible to persons with disabilities, leading to an uneven distribution of benefits. This paper reviews the main challenges to the realization of ICT-enabled inclusive development and presents cost-beneficial policy and practice recommendations for governments and development practitioners

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