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The implications of ensuring equal access and inclusion of persons with intellectual disabilities and mental health issues in disaster risk reduction and humanitarian action. A rapid literature review conducted for NAD by EENET

EENET
December 2017

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This literature review seeks to gain a better understanding of the particular challenges faced by people with intellectual disabilities and those with mental health issues in Palestine and the refugee settings in Lebanon. An overview of the Palestine and Lebanon contexts is presented. Mental health and intellectual disability in situations of risk and the disproportionate impacts are discussed.  Access to and inclusion in disaster risk reduction (DRR) and humanitarian response are also discussed.

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Is Adaptive Behaviour too Normal to be Normally Distributed?

SPREAT, Scott
2017

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Purpose: This study attempts to ascertain if adaptive behaviour complies with the characteristics of a normal distribution.

 

Methods: Adaptive behaviour data collected from two large state samples of 2900 were reviewed to determine the shape of their distributions. A smaller convenience sample of 37 adults without intellectual disability was similarly reviewed.  

 

Results: Findings suggest that the shape of the distribution of adaptive behaviour increasingly deviates from normal as cognitive abilities increase.   

 

Conclusions/Implications: It does not appear that adaptive behaviour is normally distributed. This will impact the diagnosis of intellectual disability because while IQ scores two standard deviations below the mean reliably cut off about 2% of the population, a similar cut-off cannot be assumed for adaptive behaviour.

Development and Standardization of a Test of Motor Proficiency in Children with Intellectual Disabilities in India

KALGOTRA, Ritu
WARWAL, Jaspal Singh
2017

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Purpose: To develop a scale for the assessment of gross and fine motor skills of the children with mild and moderate intellectual disabilities so that their skills could be assessed and accordingly interventions in physical activities could be specifically designed for them.

 

Method: Thirty-eight items for the Test of Motor Proficiency scale was developed after initial try out, pilot study and final try-out by the researchers. Fifty children with mild intellectual disabilities (n = 26), and moderate intellectual disabilities (n = 24) aged between 6 to 17 years fulfilling inclusion and exclusion criteria were selected from special schools in Jammu district, J&K (India).The Test of Motor Proficiency was administered on the selected sample.

 

Results: Internal consistency as calculated through Cronbach's Alpha was .906, indicating very good reliability. There was a highly significant correlation between the two independent assessments in inter-rater reliability r (48) = .95, p< .05 and  also within the domains of motor proficiency, Visual-Motor control r (48) =.728, p< .05, Upper limb speed and dexterity r (48) = .98, p< .05 , Running speed and agility r (48) =.99, p< .05, Bilateral coordination   r (48) =.96, p< .05, Strength r (48) =.95, p<.05, upper limb coordination r (48) =.62, p< .05. Concurrent validity of Test of Motor Proficiency was established against BASIC- MR; the correlation of BASIC-MR (M = 151.92, SD = 18.08, N = 50) and Test of Motor Proficiency (M = 49.22, SD = 12.23, N = 50) was highly significant r (48) = .76, p< .05. The construct validity assessed through test retest was r (48) =.97, p< .05.

 

Implications: The Scale can be used in the assessment of gross and fine motor skills of children with mild and moderate intellectual disabilities for clinical and research purposes.

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.

Positive and Negative Impacts on Caregivers of Children with Intellectual Disability in India

ADITHYAN, G S
SIVAKAMI, M
JACOB, John
2017

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Purpose: The factor integral to the empowerment of children with intellectual disability is the presence and active involvement of support mechanisms such as their family and their caregivers. This study assesses both positive and negative impacts on parents/caregivers of children with intellectual disability in Oddanchatram block of Dindigul District in Tamil Nadu, India.

 

Method: Mixed method techniques (quantitative and qualitative) were used.

 

Results: Although many disturbing realities in the family situation were revealed, there were also positive impacts which were a hopeful sign.

 

Conclusion: Empowering the caregivers of children with intellectual disability is the first step towards inclusion of these special children in society. Various strategies to achieve this goal are discussed in the study. 

Enhancing reading abilities of learners with intellectual impairments through computer technology

MOSITO, Cina P.
WARNICK, Albert M.
ESAMBE, Emmanuel E.
2017

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Background: Developments in the teaching of children with disabilities support pedagogy that emphasises learners’ strengths as opposed to their assumed deficiencies. Educators and mediators who advocate this view continually strive for tools and methodologies that enhance learner participation in academic environments. Computer technology is one of the tools recognised for its potential to enrich learning experiences of learners with an intellectual impairment.


Objectives: We sought to assess the influence of text-to-speech stories on the reading ability of intellectually challenged learners.

 

Method: A qualitative action research study that involves learners at a special school in Cape Town, South Africa. Pre- and post-test data of the reading performance of learners are analysed with a focus on how they demonstrate change.

 

Results: Although no claims can be made about the explicit influence on reading performance, computer-assisted learning has the potential in isolating reading processes that classroom-based interventions can address. In addition, computers enhance motivation and enthusiasm to learn.

 

Conclusion: A need for education based on inclusion and positive differentiation remains the key driver in any educational interventions.

Towards a new directional turn? Directors with cognitive disabilities

SCHMIDT, Yvonne
2017

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Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.

A new way to measure child functioning

UNICEF
WASHINGTON GROUP
May 2017

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"In recognizing the need for a set of questions that would produce internationally comparable data on children, the Washington Group formed a subgroup in 2009 that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011.

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The Washington Group/UNICEF Module on Child Functioning, finalized in 2016, covers children between 2 and 17 years of age and assesses functional difficulties in different domains including hearing, vision, communication/comprehension, learning, mobility and emotions. To better reflect the degree of functional difficulty, each area is assessed against a rating scale. The purpose is to identify the subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited participation in an unaccommodating environment. The set of questions is intended for use in national household surveys and censuses"

The module is being translated into multiple languages. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.

Effect of Music Intervention on the Behaviour Disorders of Children with Intellectual Disability using Strategies from Applied Behaviour Analysis

KALGOTRA, Ritu
WARWAl, Jaspal Singh
2017

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Purpose: The effect of music intervention on mild and moderate Intellectually disabled children was studied in non-randomized pre-test post-test control group design at an Indian state (Jammu) J&K.

 

Method: The mild and moderate intellectual disabled children fulfilling inclusive and exclusive criteria were placed into control and experimental group. BASIC-MR part-B (pre-test) was administered on both the groups. Intervention in music activities using strategies from Applied Behaviour Analysis was introduced sequentially to the experimental group. Children in the control group were not involved in any additional activity. Both the groups were assessed after 6 months (post-test) to find out the effect of intervention.

 

Results: The mean difference between both the groups of mild and moderate intellectually disabled children was significant. In both mildly disabled children, F (1, 2) = 36.937, p = .026 and moderately disabled children F (1, 13) =71.686, p = .000, the effect of the music intervention was highly significant.

 

Conclusion: Music intervention program produced significant changes in the domains of violent and destructive behaviour and misbehaviours with others domains of children with mild intellectual disability. In children with moderate disability, music intervention produced significant changes in the domains of violent and destructive behaviour, misbehaviours with others, self-injurious behaviours, repetitive behaviours, hyperactivity, rebellious behaviours, and anti-social behaviours. Both mild and moderate intellectually disabled children didn’t show any significant change in temper tantrums, odd behaviours and fears domains of behaviour disorders.

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.

Gendered experiences of physical restraint on locked wards for women

FISH, Rebecca
HATTON, Chris
2017

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Physical restraint is used in inpatient services for people with intellectual disabilities as a way of holding a person to avoid injury. This article uses data from an ethnographic study in a locked unit in the north of England to explore women’s experiences of physical restraint using a feminist disability studies analysis. Data consists of field notes as well as interviews with 16 of the women who had experienced restraint, and 10 staff who worked with them. The women gave insights into the gendered phenomenon of restraint in light of their past experiences of violence. The authors argue that restraint is used with women to encourage passivity at times when more relational and therapeutic methods could be used. The article offers recommendations for alternative strategies that services can encourage.

Leaving no-one behind: using assistive technology to enhance community living for people with intellectual disability

OWUOR, John
LARKIN, Fiona
MacLACHLAN, Malcolm
April 2017

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The transformation of community care for people with intellectual disabilities (ID) through enhanced access to assistive technology (AT) is discussed. The problems associated with lack of access to AT and the extent to which these occur are reported. Issues in lack of AT provision, including lack of global standards, are discussed. A call to action is made with reference to the appropriate parts of CRPD.   

 

 

Disability and Rehabilitation: Assistive Technology, 12:5, 426-428

DOI: 10.1080/17483107.2017.1312572 

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Able to include

INCLUSION EUROPE
February 2017

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"The ABLE TO INCLUDE solution improves the quality of life of people with intellectual or developmental disabilities (IDD) and similar conditions such as people affected by dementia or any kind of cognitive impairment. To achieve this, the project integrates a set of already-developed technologies to create a context-aware accessibility layer that, by being integrated with existing and future ICT tools, can improve the day-to-day life of people with IDD by understanding their surroundings and helping them to interact with the information society. The project focuses on the most important areas that a person needs to live independently and find fulfilment as an individual: to socialize in the context of the web 2.0, to travel independently and be able to work.

Three key technologies are used as a framework to develop everyday tasks:

Text and content simplifier
A pictogram-to-text, text-to-pictogram and pictogram-pictogram translation tool
Text-to-speech functionalities

These technologies are utilised to create an accessibility layer for people with IDD in everyday tasks within the framework of the information society. The accessibility layer is accessed through an open and free API that foster the introduction of an assistive technologies layer for people with IDD in any software development."

School and classroom disabilities inclusion guide for low- and middle-income countries

BULAT, Jennae
HAYES, Anne
et al
January 2017

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This guide provides strategies and recommendations for developing inclusive classrooms and schools. We specifically address the needs of Sub-Saharan African countries, which lack the resources for implementing inclusive education. However, our strategies and recommendations can be equally useful in other contexts where inclusive education practices have not yet been adopted. Strategies for enhancing existing school and classroom environment and instruction include: modify the physical environment; modify classroom managment strategies; ensure social inclusion; adopt best instructional practices; apply strategies for students with sensory disabilities; and use assistive technologies. Strategies for adopting response to intervention include: tier by tier implementation; individualised education plans; and planning for school wide adoption of inclusive practices and a multilevel system of support.

 

 

Satellite classes: A promising model for educating children and young people on the autism spectrum

CROYDEN, Abigail
et al
2017

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Results of research into attempts to provide the best of both mainstream and specialist education for autistic children are presented. The ‘satellite class’ model of supported inclusion is where the strengths of a special school education are kept in place for selected autistic pupils as they transfer to dedicated classes within mainstream ‘host schools’. The schools studied were all within the London borough of Tower Hamlets, UK.

QualityRights materials for training, guidance and transformation

WHO
2017

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"As part of the QualityRights Initiative, WHO has developed a comprehensive package of training and guidance modules. The modules can be used to build capacity among mental health practitioners, people with psychosocial, intellectual and cognitive disabilities, people using mental health services, families, care partners and other supporters, NGOs, DPOs and others on how to implement a human rights and recovery approach in the area of mental health in line with the UN Convention on the Rights of Persons with Disabilities and other international human rights standards".

Emergency planning (for carers)

ENABLE SCOTLAND
January 2017

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Emergency planning is relevant to all carers, irrespective of the age of the carer, the age of the person they care for or the health needs or disability the cared-for person has.

The emergency planning toolkit will helps a carer create an emergency plan. Answering ‘Who, What Why, Where and When’, enables planning for any unforeseen circumstances.

Working through the toolkit, requires a carer to consider all eventualities and possible solutions. Relevant family, friends and professionals should be involved in this process.

Once a carer has worked through the toolkit they should have enough information to complete the emergency plan

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