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Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

Capturing the difference we make : community-based rehabilitation indicators manual

WORLD HEALTH ORGANIZATION (WHO)
2015

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This manual presents indicators that "capture the difference (Community-Based Rehabilitation) CBR makes in the lives of people with disabilities in the communities where it is implemented. This manual presents these (base and supplementary) indicators and provides simple guidance on collecting the data needed to inform them. The indicators have been developed to show the difference between people living with a disability and their families and those without disabilities in relation to the information reported in the indicators. This comparability provides valuable information to CBR managers, donors and government agencies alike, which can be used to guide decision-making, support advocacy and improve accountability. Further, the ability of the indicators to provide a comparison of the populations of persons with disability to persons without disability aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which states that persons with disability have equal rights to those without disabilities...this manual serves to standardize the monitoring of differences made by in the lives of people with disabilities and their families, making it possible to compare the difference CBR makes across areas and countries. This manual aligns with the WHO Global Disability Action Plan 2014–2021, and may also be used to monitor other development plans in an easy and efficient way”

Personalised social support : thoughts, method and tools in an approach of proximity social services

RELANDEAU, Audrey
et al
May 2010

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This paper is a methodological guide to personalised social support to enhance understanding, thinking about and practising this approach to social work. It is targeted at field workers and public services’ or association advisers responsible for receiving, informing, guiding and supporting people with disabilities and other vulnerable groups.
This guide is divided into three sections. First, a "principles and benchmarks" section explores the theoretical aspects of social work, development and personalised social support. This section is followed by a "Practical guide" targeted at social workers, facilitators and advisers responsible for providing support and provides an in-depth guide to implementing personalised social support, based on various intervention techniques and practical tools. This section also offers a section devoted to project managers or social mecha¬nism coordinators, featuring benchmarks for the development and follow-up of a social support service. The third section features a "Toolbox" consisting mainly of tools sourced from Handicap International programmes

Integrating mental health into primary care : a global perspective

WORLD HEALTH ORGANIZATION (WHO)
WORLD ORGANIZATION OF FAMILY DOCTORS (WONCA)
2008

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This report provides the rationale and know-how on integrating mental health into primary health care. It outlines primary care for mental health in context and then presents primary care for mental health in practice, highlighting 12 case studies and key lessons learnt from specific countries. A detailed annex on the core functions of primary care workers is provided, as well as 10 core principles of mental health integration. This resource is useful to anyone interested in integrating mental health into primary care

Weak promise on HIV/AIDS [whole issue]

August 2006

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This issue focuses on HIV and AIDS and ageing and considers the effects of the epidemic on the elderly. Articles look at how parents provide care during illness to their children with little formal support in Cambodia, explore the experience of older people affected by HIV in dealing with grief in Tanzania, and report on the work of 'Empathy clubs' for older women caring for children with HIV in Vietnam

Included in society : results and recommendations of the European Research Initiative on community-based residential alternatives for disabled people

FREYHOFF, Geert
Ed
2003

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This publication is a result of the project 'Included in Society' aiming at analysing the conditions in and prevalence of large residential institutions for disabled people in Europe. Data was collected from 25 European countries. The paper provides policy recommendations addressing the need for more community-based services for disabled people

Antiretroviral therapy in primary health care : experience of the Khayelitsha programme in South Africa. Case study

WORLD HEALTH ORGANIZATION (WHO)
2003

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This case study outlines and assesses the Khayelitha programme, which focused on ART provision and aimed to document the feasibility of low-cost treatment and primary health care provision in developing countries. The document details the clinical outcomes of the programmes, the strategy used to ensure adherence and the contribution made by Treatment Action Campaign (TAC) to raise awareness and pressurise the government to develop an adequate response to the epidemic. The provision of ART in Khayelitsha had also a positive impact on prevention, making more HIV-positive people aware of their status, reducing stigma, being the catalyst of educational initiatives, improving the morale of health workers and keeping families intact and less at risk. The case study concludes with a comprehensive list of lessons learned and with key recommendations for the future, which include consolidation of nurse-based care, more training activities, integration of HIV/AIDS and TB services, educational programmes aimed at improving adherence to ART and a greater focus on paediatric AIDS and ART provision in rural remote areas

We miss you all. Noerine Kaleeba : AIDS in the family

KALEEBA, Noerine
RAY, Sunanda
2002

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An updated version of the 1991 book. It tells the story of Noerine Kaleeba, one of the founders of the The AIDS Support Organisation in Uganda, whose husband died of AIDS. The book includes testimonies from Noerine's daughters about their father's death and their mother's 'going public'. It also tackles emerging issues such as access to antiretroviral drugs

Basic AIDS counselling guidelines

SOUTHERN AFRICAN AIDS TRAINING PROGRAMME (SAT)
2001

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A guide to effective counselling for people living with HIV, their families and carers, including pre- and post-test counselling, for volunteer and non-professional cousellors, or professional counsellors who don't have experience of HIV counselling. The guide covers counselling techniques, types of AIDS counselling, referral systems, record keeping and sources of support for the counsellor. It was developed by the SAT Programme based on experiences and advice of people across southern Africa

Transferring palliative care from institutions to communities

SOUTHERN AFRICAN AIDS TRAINING PROGRAMME (SAT)

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This brief publication describes the issues in home- or community-based care for chronically or terminally ill people, including those living with HIV/AIDS. It describes a project at the Island Hospice and Bereavement Service in Zimbabwe, which integrated 'traditional' home-based care (HBC) and the specialised palliative care and bereavement support offered at the hospice. It concludes that HBC projects that are linked to and supported by institutions such as hospices are able to integrate specialised skills in palliative care and bereavement support into their on-going work

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