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Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Inclusive practices in disaster risk management. Experiences of social actors and government entities in Latin America

HUMANITY & INCLUSION (HI)
December 2020

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Twelve inclusive practices are presented that explore the application of the inclusive approach to disaster risk management. Collecting and sharing inclusive practices is one axis of the project, “Inclusive Disaster Risk Management: An innovative approach towards inclusion of most vulnerable groups”, which aims to disseminate inclusive disaster risk management in Latin American countries in order to increase protection and resilience in high-risk groups. The project accompanies and strengthens regional, national, and local actors from the following countries: Bolivia, Chile, Colombia, Ecuador, Nicaragua, Paraguay, and Peru.

 

This regional initiative for inclusive disaster risk management is led by Humanity & Inclusion (HI), in partnership with Save the Children International Peru (SCI) and Cooperazione Internazionale Paraguay (COOPI). 

People with disabilities in the face of COVID-19 in the Americas and the Caribbean

UNITED NATIONS OFFICE FOR DISASTER RISK REDUCTION (UNDRR)
April 2020

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The United Nations Office for Disaster Risk Reduction (UNDRR), Regional Office for the Americas and the Caribbean, ONG Inclusiva and the Latin America and the Caribbean Network for Disability Inclusive Disaster Risk Management (LAC DiDRR Network) organized a webinar on Thursday, 23 April that focused on people with disabilities in the face of COVID-19. Reflections surrounding the inclusion and active participation of people with disabilities within all disaster risk management and disaster risk reduction processes were among the issues analysed through this seminar. The results of a survey aimed at gaining a greater understanding of the experience of people with disabilities in the face of COVID-19 that was carried out by ONG Inclusiva were also presented.

Social participation and inclusion of ex-combatants with disabilities in Colombia

RIVAS VELARDE, Minerva
Del ROCIO GARZON DIAZ, Karim
SHAKESPEARE, Tom
2019

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The purpose of this paper is to explore ex-combatants’ understandings of disability and the pathways for social reintegration available to them in Colombia. The qualitative data for the study include seven in-depth interviews with ex-combatants and 29 with key informants, including disabled people’s organisations, government agencies, international organisations and academic groups. Findings suggest that transition to civilian life for ex-combatants is made more difficult by inadequate procedures, lack of support and complex administrative data vacuums. Social determinants, historical prejudice against persons with disabilities, high levels of unemployment and political polarisation in a post conflict context combine to trigger poverty traps. The findings indicate pitfalls in the early implementation of the Colombian peace process, which did not consider structural issues that affected transition to civilian life for ex-combatants with disabilities. Furthermore, key enablers for social inclusion such as peer-to-peer support have been identified by respondents. This paper concludes that more needs to be done to enhance the voices of ex-combatants with disabilities and to understand the profound meaning of acquiring impairments through participation in conflict, as well as how post-conflict responses could enable these individuals to gain the skills they need to successfully reintegrate into their communities. 

 

Disability and the Global South, 2019, Vol.6, No. 2

Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective

GESSER, Marivete
BLOCK, Pamela
NUERNBERG, Adriano Henrique
2019

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Participation is a little discussed or researched concept in the social sciences, despite its importance in understanding activism. This article presents some theoretical and methodological considerations for promoting social participation and agency for disabled people through the work of psychologists associated with Brazilian public policies. This article takes the form of a discursive study, based on the dialogue between: a) Brazilian legislation on disability; b) Bader Sawaia’s Ethical-Political Psychology; and c) Disability Studies. Based on the assumption that psychological practices should promote participation and agency for disabled people, we present the elements that hinder or control participation. We then present theoretical methodological contributions to build practices that promote participation and agency, highlighting: a) critiques of moral and biomedical models of disability; b) understandings of disability from intersectional perspectives that incorporate it as a category of analysis; c) including disabled people in the construction of research and professional practices disabled people and d) the rupture with ableism, which blocks the participation of disabled people. Participation has shown to be a multidimensional concept that covers a spectrum of aspects – from the practice of activism to the constitution of subjectivity in disabled people.

 

Disability & the Global South (DGS), 2019, Vol. 6 No. 2

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.

 

Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.

 

Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.

National approaches to promote sports and physical activity in adults with disabilities: examples from the Netherlands and Canada

HOEKSTRA, Femke
ROBERTS, Lynn
VAN LINDERT, Caroline
MARTIN GINIS, Kathleen A
VAN DER WOUDE, Lucas H V
MCCOLL, Mary Ann
January 2018

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Purpose: This study described how the Dutch and Canadian governments promote high performance sports, recreational sports, and physical activity (PA) among adults with disabilities on a national level.

 

Methods: An internet-based study was conducted to identify and select relevant documents and websites containing information about the national approach to promote disability sports and physical activities in the Netherlands and Canada.

 

Results: Both governments promote high performance sports in similar ways, but use different strategies to promote recreational sports and physical activities. The Dutch approach is characterized by using time-limited programs focusing on enhancement of sports infrastructure and inter-sector collaboration in which municipalities have key roles. The Canadian government promotes recreational sports in disabled populations by supporting programs via bilateral agreements with provinces and territories. Furthermore, the level of integration of disability sports into mainstream sports differs between countries.

 

Conclusions: The findings of this study may inspire policy makers from different countries to learn from one another’s policies in order to optimize national approaches to promote disability sports and PA on all levels.

Teachers’ Perceptions of Disabilities on the Island of Roatán, Honduras

SCHNEIDER, Cornelia
2017

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Purpose: Roatán, a small island in Honduras, is home to six ethnic groups. Due to financial constraints, many children have limited access to schooling. This article is a study on teachers’ perceptions of disabilities and students with disabilities and inclusive education on the island.

 

Method: Twenty seven teachers working in public and private schools, and schools funded by the World Bank, were interviewed in March-April of 2014 in order to explore cultural and social representations of disabilities on the island.

 

Results: The findings show that many of the teachers’ representations can be analysed under the lens of different models of disability - the medical model, the social model, and a religious-moral model. Inclusive education is perceived less as a means of including children with disabilities in the regular classroom, and more as a method of creating institutions to take care of their needs.

 

Conclusion: There is a strong intersection of poverty, post-colonialism and disability which makes working under an inclusive lens very difficult for teachers. The cultural norms influence ideas of normalcy and disabilities, and the blame is on parents for having children with disabilities.

Guatemala National Disability Study ENDIS 2016 Report

DONICIO Carlos
GRECH Shaun
Islay MACTAGGART
Jonathan NABER
Dr Ana Rafaela SALAZAR DE BARRIOS
Gonna ROTA,
Sarah POLLACK
April 2017

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The Guatemala National Disability Study (ENDIS 2016) was undertaken to address a need for up to date reliable data on disability in Guatemala.

Through a population based survey:

* To estimate the national disability prevalence among adults and children in Guatemala, and to provide regional estimates for 5 broad regions

* To disaggregate the prevalence of disability in Guatemala by age, sex, type of functional limitation and socio-economic status

* To explore the impact of disability on: poverty, quality of life, participation, health and opportunities to go to school and to work amongst children and adults respectively

Through a qualitative study:

* To explore cultural, ideological, and social interpretations and responses to disability; provide insight into the disability and poverty relationship; and examine social, political, and economic dimensions operating within this relationship.

Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: reflections and learning

WEBER, Joerg
GRECH, Shaun
POLACK, Sarah
2016

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Calls for evaluations in Community Based Rehabilitation (CBR), in particular those of a participatory nature have stepped up in recent years. Much of this shifting discourse has emerged in response to the fact that evaluations overall remain scarce. Furthermore, very little is known about the impacts of CBR in practice and if/how it benefits persons with disabilities and their families on the ground. Nevertheless, and despite the calls for participatory approaches, the few existing efforts are too often targeted at creating standardised evaluations frequently at the expense of voice, participation and flexibility. This paper reports on a series of critical workshops held in Jamaica with CBR workers and other stakeholders, the objectives of which included discussions and reflections on emerging issues in localised, locally driven and responsive participatory evaluation frameworks. The findings highlight how participants favoured a flexible, adaptive and iterative approach that was not rigid, structured or per-determined by outsiders. Instead, they favoured an approach that created a safe space for sharing and learning, prioritised their narratives, and that was directly linked to and that fed directly into action on the ground. The paper concludes with the call for critical, engaged and bottom-up approaches that move away from control-oriented approaches in CBR towards more experimental and adaptive problem and process-oriented approaches, that embrace complexity and that are consistently responsive to an ever changing context.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

The right to vote of persons with disabilities in Chile : Law no 20.183 as a factor of progress for inclusive democracy

REYES, Maria Soledad Cisternas
March 2013

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"This article describes the process of adoption of Law 20.183 of 2007, which recognises the right of persons with disabilities to have support in the act of voting. The process began with a lawsuit which inspired legal research conducted at the national level. A project of civil society advocacy was subsequently developed and implemented to promote the right to vote of persons with disabilities. The process resulted in a legislative initiative and culminated in the adoption of the 2007 Constitutional Act on voting and elections which recognized the right to support in the act of voting for persons with disabilities"
IDA Human Rights Publication Series, Issue 1, The Right to Vote and to Stand for Election

Project : ¨Right to Choose¨|Manual for best practices and lessons learned|Inclusion of people with disabilities in the electoral and political processes of the Dominican Republic, 2012-2013

IBERO-AMERICAN NETWORK OF ORGANIZATIONS OF PEOPLE WITH DISABILITIES IN THE DOMINICAN REPUBLIC (LA RED)
INTERNATIONAL FOUNDATIOIN FOR ELECTORAL SYSTEMS (IFES)
Eds
2013

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This manual presents the best practices and lessons learned from the "Right to Choose: Inclusion of People with Disabilities in the Electoral and Political Processes of the Dominican Republic" project. The project sought to motivate key public officials to create and strengthen conditions for political participation of people with disabilities in the Dominican Republic

Assessment of election access barriers in Guatemala

SERPE, Lauren
November 2012

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This research report presents the lessons learned from various activities to improve the inclusion of persons with disabilities in the electoral process and future programming needs in Guatemala. Three research activities captured the different perspectives of those working on or affected by inclusion issues: a survey of 250 electoral authorities; six focus groups consisting of persons with disabilities and those who work with persons with disabilities; and six in-depth interviews with leaders of disabled persons organizations (DPOs) with whom IFES had worked during the previous electoral cycle

Defining the barriers to political participation for individuals with disabilities

HALL, Thad E
ALVAREZ, R. Michael
May 2012

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This report examines the barriers to political participation that can exist for individuals with disabilities. Such studies can be difficult because there are few studies that examine both disability status and political variables such as party identification and ideology. No studies directly ask about whether a person’s disability status directly interferes with the various aspects of political participation, such as getting news about candidates or navigating the polling place in order to vote. The analyses that follow utilize data from several surveys, including the Current Population Survey, the 2008 Study of the Performance of American Elections, and the 2008 Cooperative Congressional Election Study
Working Paper #001

Electoral participation of electors with disabilities : Canadian practices in a comparative context

PRINCE, Michael J
March 2012

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"This report addresses three main research questions: What barriers do people with disabilities, physical and/or mental, face when trying to vote? What reforms have countries and, in the case of Canada, provinces introduced since 2000 to reduce or eliminate barriers to voting for people with disabilities? More specifically, what services, supports and laws or standards have governments introduced to ensure better access to voting by electors with disabilities The specific focus of this report is on the right to vote, rather than on the right to freely associate as an activist or to run as a candidate and to hold elected office. Five national jurisdictions are reviewed in this report, specifically Australia, Canada, the United Kingdom, the United States and New Zealand. On Canada, attention is given to developments and practices at the federal, and provincial and territorial levels of government"

"I want to be a citizen just like any other" : barriers to political participation for people with disabilities in Peru

BARRIGA, Shantha Rau
et al
2012

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"This report documents legal, physical, communication and attitudinal barriers experienced by people with different disabilities in exercising their right to political participation just like others in society. It also examines how restrictions on legal capacity impact the ability of people with intellectual and psychosocial disabilities in particular to enjoy a range of rights, including the right to own or inherit property, be employed or legally represent their children"
Note: This report is available in pdf, word and easy-read formats

Inclusive democracies require voting rights for people with disabilities

NEIER, Aryeh
November 2011

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This blog post presents the story of a woman with Down Syndrome who initially was prevented from voting in Peruvian elections because of her intellectual disability but successfully won her right to vote. The article concludes by encouraging inclusive policies that support the participation of people with disabilities in political life
Note: This post is part of a blog series that reflects on The Open Society Foundations work to advance the rights of persons with disabilities around the world

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