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What are the most effective strategies for strengthening health systems for disability inclusive development? - Evidence brief

MACTAGGART, Islay
February 2021

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Health system strengthening refers to initiatives that improve one or more functions of health systems, leading to better health. There is a large body of evidence on what works to strengthen health systems in low- and middle-income countries (LMICs), much of which is aligned to the World Health Organization (WHO) health system building blocks (service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership/governance). Despite the fact that some people with disabilities have additional health needs, and many face additional barriers to accessing healthcare, inclusion of people with disabilities is largely missing from this evidence base. Separately, a smaller evidence base exists on increasing the effectiveness of specific health-related services targeting people with disabilities, such as health-related Community Based Rehabilitation (CBR), rehabilitation services more broadly, and mental health services. This second evidence base is less closely aligned to the building blocks. Reviewing these outputs in parallel goes some way towards identifying effective strategies for strengthening health systems for disability inclusive development.

The role of rehabilitation care workers in South African healthcare: A Q-methodological study

GAMIET, Shamila
ROWE, Michael
October 2019

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Background: The South African Department of Health identified the need to train a new cadre of community health worker (CHW) in the field of rehabilitation as part of their 2030 Health Plan that aims to improve primary healthcare (PHC) and community-based rehabilitation (CBR). Community health workers can be effectively utilised in CBR if their role is understood and their potential is not limited by professional protectionism and scepticism. A clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals.

 

Objectives: The aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (RCWs), in South African healthcare.

 

Methods: Q-methodology was used to gather and interpret the data. A convenient sample of 16 health professionals participated in the study. Participants ranked statements about the role of the RCWs from strongly agree to strongly disagree. Data were entered into PQMethod software program for statistical and factor analysis.

 

Results: Two factors emerged. Participants loading onto Factors 1 and 2 were of the opinion that RCWs’ role would be to strengthen PHC and CBR and to promote participation of people with disabilities (PWD) in intermediate care and community.

 

Conclusion: Rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in CBR. Rehabilitation care workers were perceived as capable of enhancing the lives of PWD by ensuring inclusive development.

 

 

African Journal of Disability, Vol 8, 2019

Cameroon: People With Disabilities Caught in Crisis - Funds Needed to Scale Up Humanitarian Response

HUMAN RIGHTS WATCH
August 2019

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Over the past three years, Cameroon’s Anglophone regions have been embroiled in a cycle of violence that has claimed an estimated 2,000 lives and uprooted almost half a million people from their homes. People with disabilities caught in the violence struggle to flee to safety when their communities come under attack. They also face difficulties in getting necessary assistance.

Between January and May 2019, Human Rights Watch interviewed 48 people with disabilities living in the Anglophone regions, their family members, representatives of UN agencies, and national and international humanitarian organizations to investigate how the crisis in the North-West and South-West regions has disproportionately affected people with disabilities. Some of their stories are presented.

 

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

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SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

World report on vision

WORLD HEALTH ORGANISATION (WHO)
2019

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This report makes the case that integrated people-centred eye care is the care model of choice and can help meet the challenges faced. Chapter 1 highlights the critical importance of vision; describes eye conditions that can cause vision impairment and those that typically do not; reviews the main risk factors for eye conditions; defines vision impairment and disability; and explores the impact of vision impairment. Chapter 2 provides an overview of the global magnitude of eye conditions and vision impairment and their distribution. Chapter 3 presents effective promotive preventive, treatment, and rehabilitative strategies to address eye care needs across the life course. Chapter 4 starts by taking stock of global advocacy efforts to date, the progress made in addressing specific eye conditions and vision impairment, and recent scientific and technological advances; it then identifies the remaining challenges facing the field. Chapter 5 describes how making eye care an integral part of universal health care (including developing a package of eye care interventions) can help address some of the challenges faced by countries. Chapter 6 presents IPEC and explains the need for engaging and empowering people and communities, reorienting the model of care based on a strong primary care and the need for coordinating services within and across sectors; and creating an enabling environment. The report ends with five recommendations for action that can be implemented by all countries to improve eye care. 

Realisation of sustainable development goals by, for and with persons with disabilities: UN flagship report on disability and development 2018

UNITED NATIONS DEPARTMENT FOR ECONOMIC AND SOCIAL AFFAIRS (UNDESA)
December 2018

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This report represents the first UN systemwide effort to examine disability and the Sustainable Development Goals (SDGs) of the 2030 Agenda for Sustainable Development at the global level. The report reviews data, policies and programmes and identifies good practices; and uses the evidence it reviewed to outline recommended actions to promote the realization of the SDGs for persons with disabilities. Over 200 experts from UN agencies and International Financial Institutions, Member States and civil society, including research institutions and organizations of persons with disabilities, contributed to this report. The report covers new areas for which no global research was previously available, for example, the role of access to energy to enable persons with disabilities to use assistive technology. It also contains the first global compilation and analysis of internationally comparable data using the Washington Group on Disability Statistics short set of questions. Reviews of legislation from 193 UN Member States were conducted and analysed for this report to highlight good practices and to assess the current status of discriminatory laws on voting, election for office, right to marry and others

Including children with disabilities in preschool education. Experiences of Plan International Mozambique

PLAN INTERNATIONAL
August 2018

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Between 2015 and 2017, Plan International Mozambique worked together with communities supporting 106 preschools in rural Mozambique. In late 2016, an approach was piloted in 18 community-based preschools to support them to be disability-inclusive. The overall goal was to increase the number of children with disabilities enrolled in Early Childhood Care and Education (ECCE) centres delivering quality early learning opportunities. The pilot took place over a 12 month period. Summarised findings about the current status of inclusion in preschool programmes run by Plan International Mozambique, case studies and lessons learned about the inclusion of children with disabilities in these programmes are provided.  

 

They describe five aspects that need to be considered to remove barriers and ensure that children with disabilities can access and benefit from early childhood education:

1. Work directly with the parents of children with disabilities

2. Address individual physical and medical needs of children with disabilities

3. Build the skills and confidence of caretakers

4. Equip and build a strong implementing team

5. Build evidence on what is happening and what (doesn’t) work

Disability inclusion and accountability framework

McCLAIN-NHLAPO, Charlotte
et al
June 2018

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The main objective of the Disability Inclusion and Accountability Framework is to support the mainstreaming of disability in World Bank activities. It lays out a road map for (a) including disability in the Bank's policies, operations and analytical work, and (b) building internal capacity for supporting clients in implementing disability-inclusive development programs. The primary target audience of the Framework is Bank staff but it is also relevant to the Bank's client countries, development partners and persons with disabilities. The framework provides four main principles for guiding the World Bank’s engagement with persons with disabilities: nondiscrimination and equality, accessibility, inclusion and participation, and partnership and collaboration. 

 

The appendices to this framework highlight key areas in which the Bank can have a significant impact on the inclusion, empowerment, and full participation of persons with disabilities. These areas include transport, urban development, disaster risk management, education, social protection, jobs and employment, information and communication technology, water sector operations, and health care. 


Report No. 126977
 

“They Stay until They Die” A lifetime of isolation and neglect in institutions for people with disabilities in Brazil

RIOS-ESPINOSA, Carlos
et al
May 2018

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This report documents a range of abuses against children and adults with disabilities in residential institutions in Brazil. The research is based on direct observations during visits to 19 institutions (known in Brazil as shelters and care homes), including 8 for children, as well as 5 inclusive residences for people with disabilities. In addition, Human Rights Watch researchers interviewed 171 people, including children with disabilities and their families, adults with disabilities in institutions, disability rights advocates, representatives of non–governmental organizations, including disabled persons organizations, staff in institutions, and government officials.

 

Research was carried out between November 2016 and March 2018 in the states of São Paulo (including São Paulo and Campinas), Rio de Janeiro (including Rio de Janeiro, Duque de Caxias, Niteroi and Nova Friburgo), Bahia (Salvador) and Distrito Federal (including Brasilia and Ceilândia).

Caregivers' views on stigmatisation and discrimination of people affected by leprosy in Ghana

ASAMPONG, Emmanuel
DAKO-GYEKE, Mavis
ODURO, Razak
January 2018

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In Ghana, the social interpretation of leprosy regardless of the language, culture and tradition engenders stigmatisation and discrimination that leads to social rejection and exclusion of persons who have been cured of the disease. Often, these persons are cared for by relatives who happen to live with them in a confined place. From the views of these caregivers, this paper identifies areas of stigmatising and discriminatory tendencies against people affected by leprosy who reside in a Leprosarium in Accra. A qualitative interview with semi-structured interviews were conducted for twenty caregivers.

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

Strengthening environmental sustainability and inclusion in health and other development programs. Practical guidance for environmental sustainability, accessibility, gender, safeguarding and disaster risk reduction

CBM
2018

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The purpose of this booklet is to promote discussion and innovation for strengthening environmental sustainability and inclusion in health and other development activities. The case studies and checklists are designed to foster creative thinking and the ongoing gathering of evidence related to these topics. The booklet will be useful to anyone seeking high quality outcomes from health and other development programs. The information was first compiled for CBM’s engagement in the General Assembly of the International Agency for the Prevention of Blindness 2016, however will be useful for advancing sustainable development with inclusion in any context.

The case sutdies are: Environmental Sustainability in Eye Health, Caritas Takeo Eye Hospital (CTEH), Cambodia; and  Strengthening Accessibility and Inclusion in Eye Health. UMC Kissy Eye Hospital, Freetown, Sierra Leone, West Africa

Global AgeWatch Insights. The right to health for older people, the right to be counted

ALBONE, Rachel
et al
2018

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This report considers the progress being made to achieve older people's right to health amid the global drive towards universal health coverage. It explores how older people are currently accessing health services and what changes need to be made to improve on this. It considers the role of data in driving and informing changes to health systems and the services they deliver. Data must be collected with and about older people to ensure adequate evidence for service design and delivery that is targeted and appropriate. This report explores the adequacy of current data systems and collection mechanisms and how, alongside health systems, they must be adapted in an ageing world. 

 

This report is supported by 12 country profiles (for Argentina, Colombia, El Salvador, Kenya, Lebanon, Moldova, Myanmar, Pakistan, Serbia, Tanzania, Vietnam and Zimbabwe; see Appendix 1). These provide national information on trends in the physical and mental health status of older people, and population-level information on access to UHC. The profiles are supplemented by data mapping, showing the national data available on older people’s health in the 12 profile countries, and revealing the data gaps. The data mapping results are available at www.GlobalAgeWatch.org.

Defying the barriers

KHONDKAR, Laila
HAQUE, Reazul Md
January 2018

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Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

 

The research topics were:

  • Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
  • The Vulnerabilities of Children with Disabilities from Low-income Households
  • Social Protection Schemes Relevant to Children with Disabilities and their Families 

 

Do experiences and perceptions about quality of care differ among social groups in Nepal? A study of maternal healthcare experiences of women with and without disabilities, and Dalit and non-Dalit women

DEVKOTA, Hridaya Raj
MURRAY, Emily
CLARKE, Andrew
GROCE, Nora
December 2017

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Background
Suboptimal quality of care and disparities in services by healthcare providers are often reported in Nepal. Experience and perceptions about quality of care may differ according to women’s socio-cultural background, individual characteristics, their exposure and expectations. This study aimed to compare perceptions of the quality of maternal healthcare services between two groups that are consistently considered vulnerable, women with disabilities from both the non-Dalit population and Dalit population and their peers without disabilities from both non-Dalit and Dalit communities.

Methods
A cross-sectional survey was conducted among 343 total women that included women with disabilities, Dalits and non-Dalits. Women were recruited for interview, who were aged 15–49 years, had been pregnant within the last five years and who had used maternal care services in one of the public health facilities of Rupandehi district. A 20-item, Likert-type scale with four sub-scales or dimensions: ‘Health Facility’, ‘Healthcare Delivery’, ‘Inter-personal’ and ‘Access to Care’ was used to measure women’s perceptions of quality of care. Chi-square test and t test were used to compare groups and to assess differences in perceptions; and linear regression was applied to assess confounding effects of socio-demographic factors. The mean score was compared for each item and separately for each dimension.

PLoS ONE 12(12): e0188554
https://doi.org/10.1371/journal.pone.0188554

The Journal of Mental Health Training, Education and Practice, vol.12, no.4 Special Issue - Mental health pathways for people with intellectual disabilities: the education, training and practice implications

CHARNOCK, David
WRIGHT, Nicola
Eds
November 2017

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"This special edition aims to address some of the complexities and challenges faced in mainstream mental health services in three ways. First, to highlight the specific needs of people with intellectual disabilities and mental health problems. Second, to promote the importance of interdisciplinary working and learning in relation to mental wellbeing and intellectual disability, showcasing innovative approaches to care and finally, to offer a voice to specialists from intellectual disability practice and research to foster practical and conceptual thinking in relation to this group of service users"

There is a freely accessible editorial and there are six papers:

  • People with intellectual disabilities accessing mainstream mental health services: some facts, features and professional considerations
  • Psychiatry and intellectual disabilities: navigating complexity and context
  • Development and dissemination of a core competency framework
  • Mental health staff views on improving burnout and mental toughness
  • Using wordless books to support clinical consultations
  • Actors with intellectual disabilities in mental health simulation training

Full articles are not free.

Ensuring universal access to eye health in urban slums in the Global South: the case of Bhopal (India).

PREGEL, Andrea
et al
October 2017

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In the context of its Urban Eye Health Programme in Bhopal (India), Sightsavers launched a pilot approach aimed at developing an Inclusive Eye Health (IEH) model and IEH Minimum Standards.

Accessibility audits were conducted in a tertiary eye hospital and four primary vision centres located within urban slums, addressing the accessibility of physical infrastructures, communication and service provision. The collection and analysis of disaggregated data inform the inclusion strategy and provide a baseline to measure the impact of service provision. Trainings of eye health staff and sensitisation of decision makers on accessibility, universal design, disability and gender inclusion are organised on a regular basis.

A referral network is being built to ensure participation of women, people with disabilities and other marginalised groups, explore barriers at demand level, and guarantee wider access to eye care in the community. Finally, advocacy interventions will be developed to raise awareness in the community and mainstream disability and gender inclusion within the public health sector.

The right to live independently and be included in the community : Addressing barriers to independent living across the globe

ANGELOVNA-MLADENOVA, Lilia
June 2017

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"This reports looks at the main barriers to the realisation of disabled people’s right to live independently and be included in the community, which is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). They are grouped in seven broad areas: (1) misunderstanding and misuse of key terms, (2) negative attitudes and stigma, (3) lack of support for families, (4) prevalence of institutional services, (5) barriers related to community support services, (6) barriers in mainstream services and facilities, and (7) barriers, concerning other CRPD provisions, with effect on Article 19. A set of recommendations is also provided, outlining measures required to address these barriers"

“When will I get to go home?” Abuses and discrimination against children in institutions and lack of access to quality inclusive education in Armenia

BUCHANAN, Jane
February 2017

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This report documents how thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. The report is based on Human Rights Watch visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people, in eight cities in Armenia. They interviewed 47 children and young adults, and 63 families of children living in orphanages, attending special schools or attending mainstream schools. They also interviewed directors of orphanages, special schools, and mainstream schools, as well as social workers, doctors, teachers, psychologists, caregivers, and other staff in institutions

Topics include: overview of residential institutions in Armenia; institutionalization of children and young adults and discrimination in the deinstitutionalization process; problems for children and young adults in residential institutions; lives transformed; national and international legal obligations; failure to guarantee quality education to children with disabilities; other forms of education for children with disabilities; government and donors’ response; recommendations

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