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Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Global survey of inclusive early childhood development and early childhood intervention programs

VARGAS-BARON, Emily
et al
March 2019

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To learn more about the current status of IECD (inclusive early childhood development) and ECI (early childhood intervention) programs, three international organizations collaborated to conduct a global survey: RISE Institute; UNICEF; and the Early Childhood Development Task Force (ECDtf), which is within the Global Partnership on Children with Disabilities (GPcwd). This large survey was designed in 2016, was conducted in 2017, and the report was prepared in 2018.

 

The main objectives of the survey were to:

  • Map current implementation of IECD and ECI programs and related activities;
  • Describe key IECD and ECI program features;
  • Identify gaps and challenges in providing accessible IECD and ECI services;
  • Document factors associated with successful implementation and scale-up;
  • Generate recommendations to inform future policy and program development and national planning and implementation efforts.

 

The online survey targeted a range of programs, and activities including IECD and ECI services; rehabilitation and habilitation services; humanitarian, emergency, and child Global Survey of Inclusive ECD and ECI Programs 8 protection services; advocacy campaigns; and research and evaluation projects. 

 

Program respondents provided information on 426 programs that were implemented in 121 countries. 

Deaf people in Pacific Island countries. A design for the Pacific deaf strenthening program

JENKIN, Elena
WATERS, Philip
SEN, Krishneer
ADAM, Robert
2019

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Pacific Disability Forum (PDF) is committed to advancing the rights of people with disabilities living in Pacific Island Countries (PICs). Developing an evidence base to understand more about deaf children and adults’ experiences and priorities will better assist communities, DPOs, organisations and governments to plan inclusive communities, policy and programs.

 

The development of the design was deliberately planned to be highly collaborative and the team met with 161 people who shared their views. This provided opportunities for deaf people and DPOs to contribute to the design, along with representatives from government, non-government and regional organisations. This collaboration occurred in three countries in the Pacific, namely Solomon Islands, Samoa and Fiji. Within Fiji, the design team met with deaf and DPO representatives of other PIC’s along with regional multi-lateral organisations such as UNICEF and the Pacific Island Forum Secretariat (PIFS). Consultations also occurred remotely with supporting organisations and development workers that are focused on disability inclusion in the Pacific. The design undertook a desk review to learn what is known about deaf children and adults in the Pacific region. Participatory methods ensured the process was highly respectful of the views of deaf people. DPOs, other organisations and governments will be asked to identify to what extent deaf children, adults and their families are participating in services, programs and establishments, and to identify potential supports required to increase deaf people’s participation.  A capacity building element has been carefully built into the design. The report is divided into three parts. Part A rationalizes the design, with background information and a brief desk review to collect evidence from and about deaf children and adults in the Pacific. Part B describes the design development process and reports findings. Part C details the design for the situation analysis.  

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Standard school eye health guidelines for low and middle-income countries

GILBERT, Clare
MINTO, Hasan
MORJARIA, Priya
KHAN, Imran
February 2018

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The purpose of these best practice guidelines is to provide direction to those planning and implementing eye health initiatives for schools, including policy makers, health care and educational authorities, health planners, eye care delivery organizations and professionals, in partnership with teachers, parents and children. In situations where resources for eye health are limited, decisions need to be made to ensure that programs not only address public health problems but are also implemented in a way that is effective, efficient and, wherever possible, sustainable. Systems for monitoring and plans for evaluation should also be developed at the outset. These practice guidelines provide an excellent learning resource for a module on school eye health that can be incorporated in optometry and ophthalmology residency curricula.  A section highlights some of the challenges in current school eye health initiatives and provides a framework in which school eye health is integrated into school health programs. Case studies are provided to emphasise the integrated approach and a 15-step approach, from situation analysis to monitoring and evaluation, is suggested. Practical recommendations for implementation are provided, including information on the equipment and technology required

 

This evidence-based document is based on best practice guidelines initially developed through a joint collaboration between Sightsavers International, the London School of Hygiene and Tropical Medicine and the Brien Holden Vision Institute

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Services for people with communication disabilities in Uganda: supporting a new speech and language therapy professional

MARSHALL, Julie
WICKENDEN, Mary
2018

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Services for people with communication disability (PWCD), including speech and language therapists (SLTs), are scarce in countries of the global South. A SLT degree programme was established at Makerere University, Uganda, in 2008. In 2011, an innovative project was set up to provide in-service training and mentoring for graduates and staff of the programme. This paper describes the project and its evaluation over three years. Three types of input: direct training, face-to-face individual and group meetings, and remote mentoring, were provided to 26 participants and evaluated using written and verbal methods. The first two types of input were evaluated mainly positively, while remote mentoring received more mixed evaluations. Less positive evaluations were linked to factors including resourcing, cultural perceptions about professional roles and services, work patterns, power/status, engagement, perceptions of help-seeking, community recognition of the needs for services for PWCD. Findings suggest that participatory approaches, flexibility, reflexivity and open discussion with participants around support and work challenges, are important. Power gradients between white Northern ‘experts’ and relatively inexperienced East African SLTs, contributed to some challenges. Structural issues about degree programme structures and statutory bodies, provide lessons about the development of new services and professions in low-income settings. 

 

Disability and the Global South, 2018 Vol.5, No. 1

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)

Employment outcomes of skills training in South Asian countries: An evidence summary

ILAVARASAN, P Vigneswara
KUMAR, Arpan K
ASWANI, Reema
November 2017

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This evidence summary of systematic reviews provides insights for policy makers surrounding the impact of training programmes on employment outcomes. There are 11 studies included in this summary focusing on technical and vocational education and training (TVET), rehabilitation and counselling, personality development (including leadership training, stress management and communication skills training) and entrepreneurship training programmes.

 

The target groups covered in the included studies are diverse including people with disabilities, health workers, women and enterprises as a whole. The final studies comprise of one study each from 2011 and 2017; two studies each from 2013, 2015 and 2016; and three studies from 2014. The focus of this evidence is on low and middle income South Asian countries namely: Afghanistan, Bangladesh, Bhutan, India, Nepal, Pakistan, and Sri Lanka

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

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"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Rehabilitation in health systems

WORLD HEALTH ORGANISATION (WHO)
2017

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This document provides evidence-based, expert-informed recommendations and good practice statements to support health systems and stakeholders in strengthening and extending high-quality rehabilitation services so that they can better respond to the needs of populations. The recommendations are intended for government leaders and health policy-makers and are also relevant for sectors such as workforce and training. The recommendations and good practice statements may also be useful for people involved in rehabilitation research, service delivery, financing and assistive products, including professional organisations, academic institutions, civil society and nongovernmental and international organisations. The recommendations focus solely on rehabilitation in the context of health systems. They address the elements of service delivery and financing specifically. The recommendations were developed according to standard WHO procedures, detailed in the WHO handbook for guideline development

Standards for prosthetics and orthotics

WORLD HEALTH ORGANISATION (WHO)
2017

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This document provides a set of standards and a manual for implementation to support countries in developing or improving high-quality, affordable prosthetics and orthotics services. Its aim is to ensure that prosthetics and orthotics services are people-centred and responsive to every individual’s personal and environmental needs. Implementation of these standards will support Member States in fulfilling their obligations under the CRPD and in meeting the SDGs, in particular Goal 3. With these standards, any government can develop national policies, plans and programmes for prosthetics and orthotics services of the highest standard. This document has two parts: the standards and an implementation manual. Both parts cover four areas of the health system:

• policy (governance, financing and information);

• products (prostheses and orthoses);

• personnel (workforce);

• provision of services

Special appeal 2016 : Disability and mine action 2016

ICRC
November 2016

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This Special Appeal covers the funding requirements for physical rehabilitation activities for all persons with disabilities – among them, victims of armed conflict, other situations of violence and mines/ERW – as well as for initiatives related to mine action. It also summarizes the ICRC’s wider approach to addressing the needs of persons with disabilities, including its other efforts to facilitate the social and economic aspects of inclusion. The work of the Physical Rehabilitation Programme (PRP) and the Special Fund for the Disabled (SFD) is outlined. Topics associated with reducing the impact of weapon contamination and with promoting legal frameworks and government are discussed. 

The 2015 Nepal earthquake(s): Lessons learned from the disability and rehabilitation sector's preparation for, and response to, natural disasters

LANDRY, Michel
SHEPHARD, Phillip
LEUNG, Kit
RETIS, Chiara
SALVADOR, Edwin
RAMAN, Sudha
November 2016

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This article outlines lessons learned from 2015 Nepal earthquake that can be applied to future disasters to reduce overall disability-related outcomes and more fully integrate rehabilitation in preparation and planning. Information is presented on disasters in general, and then specficially on the earthquake(s) in Nepal. Field experience in Nepal before, during, and after the earthquake is described, and actions that can and should be adopted prior to disasters as part of disability preparedness planning are examined. Emerging roles of rehabilitation providers such as physical therapists during the immediate and postdisaster recovery phases are discussed. Finally, approaches are suggested that can be adopted to “build back better” for, and with, people with disabilities in postdisaster settings such as Nepal.

 

Physical Therapy, Volume 96, Issue 11, 1 November 2016, Pages 1714–1723

https://doi.org/10.2522/ptj.20150677

 

How are service users instructed to measure home furniture for provision of minor assistive devices?

ATWAL, Anita
MCINTYRE, Anne
SPILIOTOPOULOU, Georgia
MONEY, Arthur
PARASKEVOPULOS, Ioannis
2016

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Purpose: Measurements play a vital role in providing devices that meet the individual needs of users. There is increasing evidence of devices being abandoned. The reasons for this are complex but one key factor that plays a role in non-use of equipment is the lack of fit between the device, environment and person. In addition, the abandonment of devices can be seen as a waste of public money. The aim of this paper is to examine the type, the readability, and the content of existing guidance in relation to measuring home furniture.

 

Method: An online national survey involving health and social care trusts in the UK. We conducted a synthesis of leaflets associated with measurement of furniture to identify existing guidance. The content and readability of this guidance was then evaluated.

 

Results: From the 325 responses received, 64 therapists reported using guidance. From the 13 leaflets that were analysed, 8 leaflets were found to meet Level 3 Adult Literacy Standards (age 9–11). There were differences in the way in which the measurement of furniture items occurred within the leaflets with no measurement guidance reported for baths.

 

Conclusion: There is a need to standardize guidance to ensure that measurements are reliable.

WCPT report : the role of physical therapists in disaster management

SKELTON, Peter
SYKES, Catherine
et al
March 2016

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This report has two main aims: to highlight the need for physical therapist involvement in disaster management and particularly in Emergency Medical Teams (EMTs); and to brief physical therapists who want to work in the field, and national and international agencies who are already working in the field. Following an introduction to the topic of disasters, the paper outlines in separate sections the three phases of disaster management most relevant to physical therapists: preparedness; response; and recovery. Each section includes information on the role of physical therapists and details guidelines and resources to support practice in disaster management. Case studies include: Nepal, 2015 April earthquake; 2011- great East Japan earthquake; integration of rehabilitation professionals into the UK Emergency Medical Team; Nepal, 2011 onwards; Phillipines, typhoon Sendong, 2011;  Phillipines, typhoon Haiyan, November 2013; Haiti, 2011- physical therapy in post-earthquake recovery and reconstruction; Pakistan, earthquake Oct 2005; Phillipines, typhoon Bopha 2012-2013.

Living in hell : how people with mental health conditions in Indonesia are treated

HUMAN RIGHTS WATCH (HRW)
March 2016

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This report examines the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

Living in hell : abuses against people with psychosocial disabilities in Indonesia

HUMAN RIGHTS WATCH (HRW)
March 2016

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This article with a video is related to a report examining the abuses—including pasung—that persons with psychosocial disabilities face in the community, mental hospitals, and various other institutions in Indonesia, including stigma, arbitrary and prolonged detention, involuntary treatment, and physical and sexual violence. It also examines the government’s shortcomings in addressing these problems.

Based on research across the Indonesian islands of Java and Sumatra, Human Rights Watch documented 175 cases of persons with psychosocial disabilities in pasung or who were recently rescued from pasung. 

 

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