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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."

The HELP guide for community based rehabilitation workers : a training manual

LOVEDAY, Marion
2006

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This is a training manual for community based rehabilitation workers based upon physiotherapist's work on a rehabilitation project in Cape Town, South Africa. The manual is aimed at trainers of rehabilitation workers who are assumed to have adequate medical knowledge. The manual is divided into the following 4 main topics: health in the community; normal body functions; conditions and treatment; management of patients. Each section contains a summary of the learning aims for the rehabilitation workers, and the teaching is based mainly on a question and answer format
Note: originally published in 1990 by SACLA Health Project

Children with hydrocephalus and spina bifida in East Africa : can family and community resources improve the odds?

MILES, M
2002

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Hydrocephalus and spina bifida are life threatening conditions that often result in severe dsabilities. Risks are much reduced by immediate surgery and careful managment, but neither has been available for most of the sub-Saharan African population. This paper traces the growth of solutions and some socio-cultural resources that historically have supported family and community care for children with severe disabilities, mainly in Tanzania, and nearby countries. Some community-based rehabilitation (CBR) work with children with spina bifida and hydrocephalus is described, and challenges to the CBR approach are noted from the increased survival of people with disabilities requiring complex care. More appropriate information, recognition of indigenous knowledge, enlistment of community resources and financial assistance are needed to enhance the lives of East Africans with hydrocephalus, spina bifida and other severely disabling conditions

Promoting the development of infants and young children with spina bifida and hydrocephalus : a guide for mid-level rehabilitation workers

WORLD HEALTH ORGANIZATION (WHO) Rehabilitation Unit
1996

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This manual explains the types, signs and causes of spina bifida and hydrocephalus describing how to assess the child’s level of development and complications. It gives suggestions on how to promote the child’s normal development, mobility, self-care and education with examples of equipment that can be made from local materials

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