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Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Product Narratives: the challenges of supply and demand-side barriers for priority AT

HOLLOWAY, Cathy
OLDFREY, Ben
END FINEBURG, Alison
SEGHERS, Frederic
SOENDERGAARD, Dennis
September 2020

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This Disability Innovation Live session, looked at the Assistive Technology (AT) Product Narratives (PNs). The Product Narratives were developed by the Clinton Health Access Initiative (CHAI) under the FCDO funded AT2030 programme, led by GDI Hub, in support of the ATscale Strategy.

These PNs set out what we know about the state of the global market for each AT product, and identify global recommendations for how to address some of the barriers to access currently experienced in low and middle-income countries. In this session, we hear from the experts about what the PNs are, how they will inform global policy, and how we hope they will help us reach more people with life-changing AT

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.

Opening the GATE: systems thinking from the global assistive technology alliance

LAYTON, Natasha
BELL, Diane
BUNING, Mary Ellen
CHEN, Shih-Ching
CONTEPOMI, Silvana
RAMOS, Vinicius Delgado
HOOGERWERF, Evert-Jan
INOUE, Takenobu
MOON, Inhyuk
SEYMOUR, Nicky
SMITH, Roger O
DE WITTE, Luc
2020

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Purpose: 

This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.

 

Methods: 

The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.

 

Results: 

This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.

 

Conclusion:

 Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.

Policy brief: Access to assistive technology

WORLD HEALTH ORGANISATION (WHO)
2020

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This brief is for policy-makers in any ministry involved in designing assistive technology policies and programmes (such as ministries of health, finance and social welfare), especially those involved in designing universal health coverage programmes. It is also relevant for all stakeholders working in these areas. The brief highlights key challenges in ensuring equitable access to high-quality, affordable assistive technology and suggests actions to improve access within universal health coverage or any other national health/welfare programme.

Every learner matters: Unpacking the learning crisis for children with disabilities

McCLAIN-NHLAPO, Charlotte
et al
June 2019

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This paper was developed by the World Bank in partnership with Leonard Cheshire and Inclusion International. It is an attempt to add knowledge to the current understanding of the importance of learning achievements, with a focus on children with disabilities. While the premise is that inclusive education refers to the inclusion of all children, the focus of this paper is on children with disabilities.

The aim of the paper is to:

  • Provide an evidence-based review of educational participation of children with disabilities.
  • Establish a case for focusing on learning achievements for students with disabilities.
  • Take stock of current mechanisms of measurement of learning outcomes and review their inclusivity.
  • Explore evidence of practice and systems which promote disability-inclusive learning for all. 

Four case studies are provided - from Pakistan, South Africa, Canada and UK.

Health economic evaluation in orthotics and prosthetics: a systematic review protocol

CLARKE, Leigh
DILLON, Michael
SHIEL, Alan
June 2019

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The aim of this systematic review is to critically appraise the existing orthotic/prosthetic health economic evaluation literature and therefore determine evidence gaps, critical method design issues and the extent to which the literature informs orthotic/prosthetic policy and investment decisions

 

Systematic Reviews volume 8, Article number: 152 (2019)

doi:10.1186/s13643-019-1066-9

 

 

Disability in Gaza: policy, barriers to inclusion and a mapping of interventions (Disability Inclusion Helpdesk Report No.12)

LEE, Harri
ABU ALGHAIB, Ola
LAURICIANO, Rabeca
May 2019

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This report presents key findings from a practical ‘know-how’ query, which included a rapid review of key literature as well as a small set of key informant interviews (KIIs) to help fill gaps and supplement online evidence. This query is based on a rapid review of the available literature to provide a brief overview of the barriers people with disabilities face in Gaza in terms of access to basic services, jobs and social inclusion/participation (Section 2), and the policy framework in Gaza in relation to the rights of people with disabilities(Section 3). The main body of this query comprises a mapping of existing interventions for people with disabilities in Gaza and an analysis of the trends and gaps in programming (Section 4)

Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia

TORO-HERNÁNDEZ, María Luisa
MONDRAGÓN-BARRERA, Mónica Alejandra
TORRES-NARVÁEZ, Martha Rocío
VELASCO-FORERO, Sandra Esperanza
GOLDBERG, Mary
2019

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Purpose: 

Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.

 

Materials and methods: 

Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.

 

Results and conclusions

One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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How to make social protection systems and schemes more inclusive of persons with disabilities is examined. Social protection can play a key role in empowering persons with disabilities by addressing the additional costs they face, yet the majority of persons with disabilities are currently excluded from schemes.

The report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The research underpinning the report comprised involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Topics covered include:

  • Types of social protection schemes for persons with disabilities
  • Levels of investment in social protection for persons with disabilities
  • Coverage of persons with disabilities by social protection
  • Impacts of social protection on persons with disabilities
  • Barriers to accessing social protection and measures to address them
  • Links between social protection schemes and other public services

Leaving no-one behind: Building inclusive social protection systems for persons with disabilities

KIDD, Stephen
et al
February 2019

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This report identifies a wide range of barriers persons with disabilities experience in accessing social protection to be overcome. It calls for better data on disability, disability-specific and old age pension schemes and expanded coverage; adapting communications about social protection schemes; and improving disability assessment mechanisms. The project involved a review of the literature, an analysis of household survey datasets, and consultations with key stakeholders and persons with disabilities in seven low- and middle-income countries: Brazil, India, Kenya, Mauritius, Rwanda, South Africa and Zambia.

Assistive technology in Tajikistan: Situational analysis

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication summarizes the current gaps, needs and opportunities for intervention in the field of assistive technology in Tajikistan. The situational analysis was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. It was undertaken in collaboration with different Government ministries and State agencies, development partners, United Nations agencies, nongovernmental organizations, disabled people’s organizations and users of assistive products. It adopted a realist synthesis approach, responsive to the unique social, cultural, economic and political circumstances in the country. The evaluation focuses on assistive technology policy and governance, service provision and the impact of assistive technology on the health and well-being of individual users and their families, with the aim of improving access to high-quality, affordable assistive products in Tajikistan.

 

200 persons with disabilities participated in a survey designed to collect information on self-reported need for assistive products, user experiences and barriers to access. An additional 11 focus groups made up of persons with disabilities and older adults held indepth discussions on assistive technology. The major providers of assistive technology (Government facilities, nongovernmental organizations, local producers) were also interviewed as part of the research"

Provision of wheelchairs in Tajikistan: Economic assessment of alternative options

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication presents the results of a study on the economic aspects of various models for the provision of wheelchairs in Tajikistan. The study was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. The study was finalized in consultation with Tajik users of wheelchairs, the Ministry of Health and Social Protection and international experts on wheelchair production and provision, and made use of national and international evidence on the provision of wheelchairs to inform the analysis and develop evidence-based policy options. While the study focuses on the Tajik context and its aspirations to expand in-country production of wheelchairs, its approach and findings will also be of interest to other countries in a similar situation and to other interested stakeholders"

 

 

The ‘compliant’, the ‘pacified’ and the ‘rebel’: experiences with Swiss disability insurance

PIECEK, Monika
TABIN, Jean-Pierre
PERRIN, Céline
PROBST, Isabelle
2019

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Switzerland’s social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. What stances do individuals who experience the implementation of these policies adopt? What kind of tests are they subjected to? How can we explain the posture they adopt – be it ‘compliant’, ‘pacified’ or ‘rebellious’ – when facing the (re)assignations of their identity and professional status? Drawing on interviews conducted with individuals who have recently been involved in programmes set up by Swiss disability insurance, we highlight their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance’s interventions.

DFID’s strategy for disability inclusive development 2018-23

December 2018

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The UK Department for International Development (DFID)'s vision is a world where all people with disabilities, women, men, girls and boys, in all stages of their lives, are engaged, empowered and able to exercise and enjoy their rights on an equal basis with others, contributing to poverty reduction, peace and stability. A world where no-one is left behind.

Over the next five years DFID will prioritise four strategic pillars for action: (i) inclusive education, (ii) social protection, (iii) economic empowerment, and (iv) humanitarian action. To complement this focus DFID are adopting three cross-cutting areas, vital to disability inclusion, which will be consistently and systematically addressed in all of their work: (v) tackling stigma and discrimination; (vi) empowering girls and women with disabilities; and (vii) access to appropriate assistive technology.

DFID have introduced a new set of standards for all DFID business units to meet. The standards require all country offices and departments to; review their leadership and culture, engage with people with disabilities, influence others, adapt programming and improve data and evidence.

Diagnostic study on Disabled Peoples’ Organisations and National Union of Organisations of the Disabled in Liberia

DEEPAK, Sunil
HARRIS, Naomi
November 2018

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A diagnostic study was carried out by a consultant to the DASU project in collaboration with the national umbrella organisation “National Union of Organizations of the
Disabled” (NUOD) to assess the institutional capacities of Disabled Peoples’ Organizations (DPOs) in Liberia. The study involved DPOs from the national capital Monrovia and in three counties – Bong, Grand Gedeh and Nimba.
The study included an initial Desk Review, collection of case studies from the field and visits to the counties to meet the county DPOs. Following these, a workshop was organised
in Monrovia in which representatives of NUOD and the concerned DPOs took part. The workshop looked at the strengths and challenges faced by NUOD and DPOs, focusing on the skills needed for stronger and active DPO leadership.

Shaping health systems to include people with disabilities. K4D emerging issues report

DEAN, Laura
et al
November 2018

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People with disabilities are at a heightened risk of communicable and non-communicable diseases and these diseases can cause debility and disability. Health needs of these people often extend beyond requiring continual longterm medical support to addressing broader social inequities. Key areas that are likely to be critical in re-orientating health systems from a biomedical approach towards inclusive health systems that are more responsive to the needs of people with debility and disability in low and middle-income countries (LMICs) are offered in this report and cover the following:

 

  • 1. Nothing about us without us: prioritising person-centred health systems
  • 2. Responding to issues of access in mainstreaming disability within health systems
  • 3. Ensuring the provision of specialised services
  • 4. Community based rehabilitation 
  • 5. Improving the collection and use of disability related data against modified legal and policy frameworks
  • 6. Partnerships are paramount
  • 7. Financing and social protection 

Case studies are provided from Sudan, India, Liberia, Uganda and Nigeria

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

Analysing disability policy in Namibia: An occupational justice perspective

CHICHAYA, Tongai F.
JOUBERT, Robin W.E.
MCCOLL, Mary Ann
2018

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Background: The Namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. In March 2017, the government publicised its intention to review the policy. Thus, this study’s purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice.

 

Objectives: The aim of the study was to develop an alternative disability policy option for Namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence.

 

Method: A qualitative research design and Bardach’s eightfold path approach to policy analysis were used. Critical disability theory provided the theoretical framework. The occupational justice framework was the conceptual framework for the study. Evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in Namibia, set evaluative criteria, project outcomes and confront trade-offs.

 

Results: Three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. Access policy had the fewest trade-offs, and the support policy had the most trade-offs in the Namibian context. Access policy was projected to foster occupational participation among persons with disabilities.

 

Conclusion: Results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in Namibia. Furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation.

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.

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