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Equal access without discrimination - The Right to Disability-Inclusive Health

LIGHT FOR THE WORLD
May 2021

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The right to the highest attainable standard of health is fundamental, as health is a precondition for equal participation in society. People with disabilities continue to experience discrimination, barriers and rights violations in their access to health. This Issue Brief outlines how governments, international organisations and development actors can mainstream disability inclusion into their health strategies, services and interventions.

Disability-related stigma and discrimination in sub-Saharan Africa and south Asia: a systematic literature review

VIRUNDRAKUMAR, Bhavisha
STEPHEN, Kathy
JOLLEY, Emma
SCHMIDT, Elena
May 2021

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This systematic literature review was undertaken to understand the extent, quality and findings of published and unpublished literature on interventions designed to tackle disability-related stigma and discrimination in sub-Saharan Africa and south Asia.

The primary focus of this review was to identify studies that describe the effectiveness of interventions to tackle disability-related stigma and discrimination. The secondary set of objectives focused on understanding the individual, interpersonal, organisational, community and public policy factors that are associated with stigma and discrimination.

“Give us the chance to be part of you, We want our voices to be heard”: Assistive Technology as a mediator of participation in (formal and informal) citizenship activities for persons with disabilities who are slum dwellers in Freetown, Sierra Leone

AUSTIN, Vicki
HOLLOWAY, Cathy
OSSUL VERMEHREN, Ignacia
DUMBAYA, ABS
BARBARESCHI, Giulia
WALKER, Julian
May 2021

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The importance of assistive technology (AT) is gaining recognition, with the World Health Organisation (WHO) set to publish a Global Report in 2022. Yet little is understood about access for the poorest, or the potential of AT to enable this group to participate in the activities of citizenship; both formal and informal. The aim of this qualitative study was to explore AT as mediator of participation in citizenship for persons with disabilities who live in two informal settlements in Freetown, Sierra Leone (SL). The paper presents evidence from 16 participant and 5 stakeholder interviews; 5 focus groups and 4 events; combining this with the findings of a house-to-house AT survey; and two national studies—a country capacity assessment and an informal markets deep-dive. Despite citizenship activities being valued, a lack of AT was consistently reported and hindered participation. Stigma was also found to be a major barrier. AT access for the poorest must be addressed if citizenship participation for persons with disabilities is a genuine global intention and disability justice is to become a reality.

 

International Journal of Environmental Research and Public Health, Int. J. Environ. Res. Public Health 2021, 18(11)

https://doi.org/10.3390/ijerph18115547

Disability and work intensity in Italian households

CALEGARI, Elena
FABRIZI, Enrico
MUSSIDA, Chiara
April 2021

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The 2030 Agenda of the United Nations clearly sets the inclusion of persons with disabilities in the labour market as a main goal. However, especially in care welfare systems characterized by a low level of social services, disability not only impacts the labour market participation of disabled people themselves but may also affect the labour opportunities of other members of their household. Using EU-SILC data to compute individual work intensity-as a better measure of the actual level of labour attainment-this paper aims to disentangle direct and indirect correlations between disability and labour market participation in Italian households.

 

Rev Econ Household (2021).

https://doi.org/10.1007/s11150-021-09559-6

How to talk to kids about disability inclusion

NANYENYA, Godfrey
April 2021

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Godfrey Nanyenya's work as a disability and inclusion specialist, involves community outreaches in the slum communities of Kampala engaging families raising children with disabilities in physiotherapy and inclusive home schooling. He encourages parents to talk to their children about disability as a normal topic. He suggests ways to approach the subject including: 

  • normalise disability
  • be mindful of language
  • keep it value neutral
  • don't shame them for their questions
  • say I don't know
  • point out similarities
  • make it a continuous conversation

Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations

HUMAN RIGHTS WATCH
HUMANITY & INCLUSION
INTERNATIONAL DISABILITY ALLIANCE
WOMEN ENABLED INTERNATIONAL
WOMEN'S REFUGEE COMMISSION
April 2021

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Joint submission on promoting and protecting the human rights of women and girls in conflict and post-conflict situations on the occasion of the twentieth anniversary of Security Council resolution 1325 by Humanity & Inclusion, Human Rights Watch, International Disability Alliance, Women Enabled International and the Women’s Refugee Commission.

This submission sets out information and recommendations on promoting and protecting the human rights of women and girls with disabilities in conflict and post-conflict situations. Women and girls with disabilities are disproportionately impacted by armed conflicts, yet remain underreported and excluded from peace and security processes. Women and girls with disabilities account for nearly one-fifth of all women and girls worldwide and face multiple and intersecting forms of discrimination based on their gender, as well as their disability. Sustainable peace, recovery and inclusive humanitarian action requires the full, equal and meaningful participation of diverse women, including women and girls with disabilities. The Office of the High Commissioner on Human Rights, in its report, should request member states, the Human Rights Council and its mechanisms, as well as other stakeholders to ensure that monitoring and reporting on the experiences of women and girls in conflicts includes the specific experiences of women and girls with disabilities, and ensure their meaningful participation in conflict prevention, response, peacekeeping and peacebuilding.

Accessibility audit costing

BROWN, Simon
SCOTT-PARKER, Susan
2021

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This excel sheet provides organisations a structured method to disaplay recommended activities for ensuring accessibility.

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

How to design disability-inclusive social protection

UN Economic and Social Commission for Asia and the Pacific (ESCAP), SOCIAL DEVELOPMENT DIVISION
April 2021

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This is the fifth in a series of policy guides developed to support policymakers and practitioners in Asia and the Pacific in their efforts to strengthen social protection.

This policy guide explains why social protection is important for persons with disabilities 
and introduces key concepts and schemes that are necessary for disability-inclusive social protection.

Towards zero leprosy. Global leprosy (‎Hansen’s Disease)‎ strategy 2021–2030

WORLD HEALTH ORGANISATION (WHO), REGIONAL OFFICE FOR SOUTH-EAST ASIA
April 2021

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The Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed through a broad consultative process with all major stakeholders during 2019 and 2020. Valuable inputs were provided by national leprosy programme managers, technical agencies, public health and leprosy experts, funding agencies and persons or members of communities directly affected by leprosy.

The Strategy aims to contribute to achieving the Sustainable Development Goals. It is structured along four pillars:

(‎i)‎ implement integrated, country-owned zero leprosy road maps in all endemic countries;
(‎ii)‎ scale up leprosy prevention alongside integrated active case detection;
(‎iii)‎ manage leprosy and its complications and prevent new disability; and
(‎iv)‎ combat stigma and ensure human rights are respected. Interruption of transmission and elimination of disease are at the core of the Strategy

First Philippine workplace inclusion forum

PFIP - Philippine Financial and Inter-Industry Pride
J P Morgan Chase and Co
Baker McKenzie
April 2021

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Breakout Sessions were:

Technology for Inclusion

Business Continuity, Resiliency and Inclusivity

Hiring for Diversity and Inclusion

The Language of Inclusion

Leave no girl with disabilities behind: Ensuring efforts to advance gender equality in education are disability-inclusive.

DIAMOND, Gloria
CASTRES, Pauline
April 2021

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This advocacy brief from the UN Girls’ Education Initiative (UNGEI) and Leonard Cheshire draws attention to the main barriers to education for girls with disabilities, in the context of major opportunities for advocacy and tangible change in 2021.  The recommendations outlined are targeted at world leaders, governments, ministries, UN agencies and NGOs. They offer a framework for rights-based action and principles towards gender-responsive and inclusive education, to ensure that no girls with disabilities are left behind. 

Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

How can we overcome barriers to accessing rehabilitation for persons with disabilities in LMIC? - Evidence brief

MACTAGGART, Islay
April 2021

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Rehabilitation is described as a set of measures to optimise the functioning of individuals, and is important for wellbeing, participation and quality of life. Rehabilitation includes diagnosis, treatments, surgeries, assistive devices and therapies. Not all people who need rehabilitation are people with disabilities, and not all people with disabilities need rehabilitation. The World Health Organisation (WHO) recently estimated that 1 in 3 people globally (2.41 billion people) would benefit from rehabilitation: this number has increased nearly two thirds since 1990, due to population growth and increase in Non-Communicable Diseases (NCDs). In contrast, there are estimated to be less than 10 skilled rehabilitation practitioners per million population in Low and Middle Income Countries (LMICs), and only 5 – 15% of people in need of assistive devices are thought to have received them.

 

Evidence is reviewed and recommendations provided

A comparison of routine and case-managed pathways for recovery from musculoskeletal disorders in people in employment

BERGMAN, Beverly P
DEMOU, Evangelia
LEWSEY, James
MACDONALD, Ewan
2021

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Purpose: To compare outcomes in employed people from an enhanced routine management pathway for musculoskeletal disorders within National Health Service Scotland with an existing active case-management system, Working Health Services Scotland.


Materials and methods: The study comprised a service evaluation using anonymised routinely collected data from all currently employed callers presenting with musculoskeletal disorder to the two services. Baseline demographic and clinical data were collected. EuroQol EQ-5DTM scores at the start and end of treatment were compared for both groups, overall and by age, sex, socio-economic status, and anatomical site, and the impact of mental health status at baseline was evaluated.

 

Results: Active case-management resulted in greater improvement than enhanced routine care. Case-managed service users entered the programme earlier in the recovery pathway; there was evidence of spontaneous improvement during the longer waiting time of routine service clients but only if they had good baseline mental health. Those most disadvantaged through mental health co-morbidity showed the greatest benefit.

 

Conclusions: People with musculoskeletal disorders who have poor baseline mental health status derive greatest benefit from active case-management. Case-management therefore contributes to reducing health inequalities and can help to minimise long-term sickness absence. Shorter waiting times contrib- uted to better outcomes in the case-managed service.

The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

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