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Older adults’ perceptions of wearable technology hip protectors: implications for further research and development strategies

HALL, Alex
BOULTON, Elisabeth
STANMORE, Emma
2018

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Purpose: 

Hip fractures are an important public health issue. Ninety-five percent of hip fractures are caused by falls, with those at greatest risk including residents of long-term care facilities. Hip protectors can be effective in preventing hip fractures, but levels of acceptance and adherence may be low. We report on work to develop research into a new hip protector that aims to overcome some of the acceptance and adherence challenges.

 

Methods: 

We held five patient and public consultation events involving 147 older adults and 10 long-term care sector staff in the Midlands and North West of England. At each event, participants were shown the Fall-Safe Assist hip protector, which includes built-in mobile technology to record information about falls and summon help from caregivers.

 

Results: 

Participants were positive about the product’s potential utility and impact upon confidence in moving around. However, many participants held highly personal perceptions of their vulnerability and need, and expressed concerns about the esthetics and practicality of the accompanying underwear. Participants highlighted potential challenges from poor mobile connectivity, and expressed concerns about product cost.

 

Conclusions:

 Future research will need to ensure flexible and sensitive approaches to recruitment. Further refinement to the product design may be useful. Individual interviews and questionnaires would help capture participants’ perceptions on personal topics, and measures of changes in confidence. Research sites will need to be compatible with technological functionality. It will be necessary to have a robust protocol in place for withdrawal of the product at the end of any clinical research.

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

BARNARD, Emma
BROWN, Chelsea R
WEILAND, Tracey J
JELINEK, George A
MARCK, Claudia H
October 2018

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

 

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

 

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

 

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.

“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia

SCHENK, Katie D
TUN, Walter
SHEEHY, Meredith
OKAL, Jerry
KUFFOUR, Emmanuel
MOONO, Grimond
MUTALE, Felix
KYEREMAA, Rita
NGIREABAKUNZI, Edson
AMANYEIWE, Ugochukwu
LECLERC-MADLALA, Suzanne
October 2018

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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.

 

Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.

 

Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.

 

Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.

 

Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.

Lost in digitalization? Municipality employment of welfare technologies

FRENNERT, Susanne
2018

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Introduction:

Swedish municipalities face a number of daunting challenges; an aging population, the public’s increased demands and expectations on municipality services, and a strained economy to mention some. Welfare technology, a Scandinavian concept launched to promote digitalization, is seen as one solution to meet these challenges.

 

Objective: 

Despite these promises, few welfare technology applications are offered by local Swedish municipalities and care organizations. Numerous studies have shown that Swedish municipalities have a great interest in welfare technologies.

 

Methods: 

In this article, we draw on empirical research in one Swedish municipality. Through two case studies it is illustrated how technological change and municipality employment of welfare technologies are employed.

 

Results: 

These case studies show how core values of care are being lost in the quest for digitalization due to the lack of organizational skills and knowledge in transforming the relationship of caregiving and care-receiving through the use of digital technology.

 

Conclusions: 

Digitalization and welfare technologies deployed ought to represent and support the core values of caregiving and to receive care. Thus, digital transformation most likely will transform conditions for care receivers and working conditions for care workers. New work processes will evolve, which in turn produce new meanings of home help service work and caregiving.

Access to assistive products in Kurigram and Narsingdi, Bangladesh. Policy brief 2.

HUMANITY & INCLUSION BANGLADESH
et al
August 2018

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This ‘policy brief’ outlines findings on Assistive technology and Products (AP) needs, unmet needs and access patterns arising the Rapid Assessment of Disability (RAD) study conducted in 2016 and 2017, in partnership between the Bangladesh Bureau of Statistics (BBS) and Humanity & Inclusion (HI) Bangladesh, with technical oversight from the Nossal Institute for Global Health, University of Melbourne, Australia. The study was part of the HI project: Towards Global Health: Strengthening the Rehabilitation Sector through Civil Society funded by the European Union. Findings from the 4254 adults surveyed in the two districts are reported here.

 

The purpose of this component of the RAD study was to learn about the usage of AP, characteristics of AP users, barriers to use of AP, unmet and met needs of AP, and to highlight major policy implications for AP service provision, in two target areas of Kurigram and Narsingdi. The survey includes an adapted version of Washington Group (WG) ‘short set’ of Disability Questions. A modified version of the WHO’s draft Assistive Technology Assessment Tool (needs module) – or the ‘ATA-needs’, was also implemented. Findings from this study also helped modify and improve the draft ATA-needs tool

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

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This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Jordan report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerning with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 6,381 persons of randomly sampled 1,159 households in Azraq and Zaatari camps and Irbid between October 2017 and January 2018. Twenty-five Key Informant Interviews (KIIs) and 3 Focus Group Discussions (FGDs) were also conducted between November 2017 and January 2018 to elicit deeper insights on the educational situation of children with and without disabilities

Removing barriers - The path towards inclusive access. Disability assessment among Syrian refugees in Jordan and Lebanon. Lebanon report

ASAI, Yahoko
et al
July 2018

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Humanity & Inclusion (HI) and iMMAP conducted a study concerned with the lack of disability data in the Syria crisis context,  which aimed to:

  • Provide statistically reliable prevalence of disability as well as disability disaggregated data indicators on access to services.
  • Increase understanding of the situation of Syrian refugees with disabilities and their households, compared to their peers without disabilities, in relation to the access to services including education, and key barriers experienced in accessing these services.
  • Recommend inclusive actions to be prioritized by humanitarian actors.

The study conducted a literature review, quantitative data collection as well as qualitative data collection. Quantitative data was collected from 2,495 persons of randomly sampled 506 households in the urban setting in Bar Elias as well as Informal Tented Settlements (ITS) in Bar Elias and Arsal in December 2017. Fourteen Key Informant Interviews (KII) were also conducted in December 2017 to elicit deeper insights on the educational situation of children with and without disabilities.

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Inclusive and safe urban mobility and Disaster Risk Management in developing countries

HUMANITY & INCLUSION (HI)
June 2018

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Disabled people are disproportionately affected by disasters owing to mobility difficulties in evacuation, lack of access to information or services and discrimination. When disasters occur, constraining external factors, such as unsafe roads and lack of accessible pedestrian and transport routes, create additional difficulties for coping with the situation. Developing cities vulnerable to disasters also are likely to have a greater proportion of the population with a disability, due to past injuries.

In this thematic brief, the importance of inclusive urban planning is emphasised. Urban mobility challenges relating to disasters discussed include: inaccessible disaster shelters, inaccessible means of evacuation and lack of information.

 

Case histories provided are: Building back better in Haiti; a focus on inclusive access and mobility; and Improving universal accessibility in Kathmandu, Nepal

 

Recommendations for improvements in policies and actions are given under the headings: 

1. Strengthening the policy and financial framework for safe and inclusive mobility action, based on evidence and through participative processes

2. Removing the barriers to safe and accessible mobility, focusing on: the built environment; transport and vehicles; people

Digital Accessibility Toolkit

CBM
May 2018

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The purpose of this toolkit is to share a selection of tools and recommendations pertaining to the accessibility of Information and Communication Technologies (ICT). Based on international standards and a scan of available technologies, these tools and recommendations are intended to contribute to the social and economic inclusion of persons with disabilities by ensuring that information is equitably accessible.

The goals of this toolkit are:

  • To outline the key international frameworks around digital accessibility and why it is critical for inclusion of persons with disabilities.
  • To link people with tools, practice examples, free online training, and other resources so that their practice is digitally accessible.
  • To ensure that digital accessibility is an inherent aspect of daily practice.
  • To align the practices of those working with and for CBM. 

This toolkit is intended to be used as a guide and practice resource by people working with and for CBM so that we produce accessible digital content and communications, and place accessibility at the centre of our ICT procurement processes. We hope that the toolkit will be a resource for the wider community of persons with disabilities, Disabled People’s Organisations (DPOs), and nongovernmental organisations (NGOs).

Mobile technology and inclusion of persons with disabilities

THOMPSON, Stephen
May 2018

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This K4D Emerging Issues report highlights research and emerging evidence that show how mobile-enabled services can help increase inclusion of persons with disabilities. The aim is to provide UK Government’s Department for International Development (DFID) policy-makers with the information required to inform policies that are more resilient to the future. This report provides a synthesis of the current evidence on how mobile technology and mobile-enabled services can help increase inclusion of persons with disabilities. It was originally planned that this report would also explore how mobile enabled technology might exacerbate existing inequalities. Some evidence was found to focus on the barriers to ICT that marginalised groups encounter, however, no evidence was found to focus on how mobile technology might exacerbate inequalities. As such, the report focuses on the positive impact that mobile technology has been shown to have in increasing the inclusion of persons with disabilities. 

This report focuses specifically on evidence produced by academic research from low and middle income countries

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

LAYTON, Natasha
MURPHY, Caitlin
BELL, Diane
2018

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

Target population’s requirements on a community-based intervention for stimulating physical activity in hard-to-reach physically disabled people: an interview study

KROPS, Leonie A
FOLKERTSMA, Nienke
HOLS, Doortje H J
GEERTZEN, Jan H B
DIJKSTRA, Pieter U
DEKKER, Rienk
May 2018

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Purpose: To explore ideas of the target population about a community-based intervention to stimulate physical activity in hard-to-reach physically disabled people.

 

Materials and methods: Semi-structured interviews were performed with 21 physically disabled people, and analyzed using thematic analyses. Findings were interpreted using the integrated Physical Activity for People with a Disability and Intervention Mapping model.

 

Results: The intervention should aim to stimulate intrinsic motivation and raise awareness for the health effects of physical activity. It should provide diverse activities, increase visibility of these activities, and improve image of physical activity for physically disabled people. Participants suggested to provide individual coaching sessions, increase marketing, present role models, and assign buddies. Potential users should be approached personally through intermediate organizations, or via social media and word of mouth promotion. Participants suggested that users, government, sponsors, and health insurers should finance the intervention. Self-responsibility for being physically active was strongly emphasized by participants.

 

Conclusions: An intervention to stimulate physical activity in hard-to-reach physically disabled people should be individualized, include personal support, and should include marketing to improve image of physical activity of physically disabled people. The intervention that fulfills these requirements should be developed and tested for effects in future research.

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

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This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

World Health Organization global disability action plan: The Mongolian perspective

KHAN, Fary
et al
April 2018

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The aim of this literature review and research was to provide an update on disability and rehabilitation in Mongolia, and to identify potential barriers and facilitators for implementation of the World Health Organization (WHO) Global Disability Action Plan (GDAP). A 4-member rehabilitation team from the Royal Melbourne Hospital conducted an intensive 6-day workshop at the Mongolian National University of Medical Sciences, for local healthcare professionals (n=77) from medical rehabilitation facilities (urban/rural, public/private) and non-governmental organizations. A modified Delphi method (interactive sessions, consensus agreement) identified challenges for rehabilitation service provision and disability education and attitudes, using GDAP objectives

 

Journal of Rehabilitation Medicine, Volume 50, Number 4, April 2018, pp. 358-366(9)

https://doi.org/10.2340/16501977-2207
 

Disability inclusion in disaster risk management - Promising practices and opportunities for enhanced engagements

GUERNSEY, Katherine
SCHERRER, Valerie
April 2018

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Disaster risk management aims to address vulnerability in order to reduce risk and therefore needs to consider the full range of vulnerability drivers, including those that affect persons with disabilities. This report presents the results of comprehensive review of the state of practice in disability-inclusive Disaster risk management (DRM) undertaken by GFDRR (Global Facility for Disaster Reduction and Recovery). The report is intended to help World Bank staff incorporate persons with disabilities and a disability perspective into their ongoing DRM work. The report will also be of interest to other development actors and stakeholders working on DRM.

Gender and disability intersectionality in practice: Women and girls with disabilities addressing discrimination and violence in Africa.

ADAMS, Lisa
et al
March 2018

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This new Making It Work report presents 9 good practices successfully addressing the prevention and response to violence and discrimination against women and girls with disabilities in Africa. It also contains key advocacy recommendations that can be used for disability and/or gender advocates in order to further promote the rights of women and girls with disabilities.

The practices were:

  • Gender-Based Violence prevention through a grassroots initiative led by women with disabilities (Rwanda)
  • Protecting urban refugee women and girls with disabilities from abuse and discrimination in Kenya
  • Advancing the access of deafblind women and girls to Sexual and Reproductive Health (Malawi)
  • Enhancing access to justice for GenderBased Violence survivors with intellectual challenges through integrated legal and psychosocial support service provision (Kenya)
  • Developing knowledge and empowerment through the Gender and Disability Inclusive Development Community of Practice (Cameroon)
  • Promoting a safer, Gender-Based Violence free environment for women and girls with disabilities in Lilongwe, Malawi
  • Restoring the dignity of women and girls with disabilities in the Plateau State of Nigeria
  • Forging a district community where women and girls with disabilities live dignified and empowered lives (Uganda)
  • Emerging Practice: Fostering peace and respect by bringing women and girls with disabilities concerns into a women’s organization (Kenya)

Participation Restriction due to Arm and Leg Motor Impairment after Stroke Rehabilitation in the Tamale Metropolitan Area, Ghana

TWUM, Frank
DOGBE, Joslin Alexander
EDUSEI, Anthony Kwaku
AMPRATWUM, Joseph
2018

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Purpose: The study was conducted to examine the relationship between arm and leg motor impairment in stroke survivors and participation restriction, post rehabilitation, within the Tamale metropolis.

 

Method: The participants were 102 stroke survivors from the Tamale metropolitan area, who had undergone at least 3 months of rehabilitation. Upper limb motor assessment was followed by lower limb motor assessment based on the Manual Muscle Test. Levels of participation restriction were measured using the London Handicap Scale. Correlation analysis of motor impairment and participation restriction were done using Spearman rank correlation analysis.

 

Results: The mean age of post-stroke participants was 62.08 years (95% CI= 59.77-64.39), with men comprising 67.65% and 32.35% women. The Spearman rank correlation co-efficient between arm motor impairment and participation was 0.8343, depicting a strong positive relationship between the aforementioned variables. The correlation between leg motor impairment and participation yielded 0.8013. Conversely, leg motor impairment was found to have a stronger relationship with participation restriction in comparison to arm motor impairment.

 

Conclusion and Implications: The strong relationship between limb motor impairment and participation restriction suggests that clinicians and disability experts involved in rehabilitation should take cognisance of the social implication of motor impairment in order to make informed decisions. Further to this, arm and leg assistive devices could be useful in reducing the levels of participation restriction among persons with stroke within the Tamale metropolis.

 

Limitations: A major limitation is that motor impairment was assessed solely on the ability to perform voluntary movement (muscle power). Sensory disturbances and motor coordination difficulties also have the potential to influence participation restriction, so the exclusion of stroke survivors who are unable to communicate implies that external validity of the research is limited.

Humanitarian inclusion standards for older people and people with disabilities

ADCAP
TILL, Celia
et al
February 2018

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The Humanitarian inclusion standards for older people and people with disabilities provide guidance across all areas and at all stages of emergency response to ensure older people and people with disabilities are not left out.

The standards consist of nine key inclusion standards, including identification, safe and equitable access, knowledge and participation, and learning. Alongside these, there are seven sector-specific inclusion standards, which include protection, shelter, health, and water, sanitation and hygiene.

Each standard comes with key actions, guidance, tools and resources, and case studies illustrating how older people and people with disabilities have been included in humanitarian responses.

The sector-specific standards provide guidance in three key areas: data and information management, addressing barriers to inclusion, and participation of older people and people with disabilities.

By implementing the key action points provided, organisations will build up a greater evidence base, deliver more inclusive programmes, and be able to better demonstrate impact on the lives of those most at risk during humanitarian crises.

The standards can be used as guidance during programme development, implementation and monitoring, and as a resource for training and advocacy.

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