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Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Enabling Education Review Issue 8 - 2019: Family involvement in inclusive education

CORCORAN, Su
LEWIS, Ingrid
Eds
2019

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Articles in this issue include:

Working together to advocate for our children in Trinidad and Tobago

The inclusion of deaf children in Malaysia: parental support and advocacy

Family-mediated intervention to support inclusion in Bulgaria

Creating inclusivity and diversity through a parent support group in Kolkata, India 

The positive impact of family involvement in inclusive education, Tetouan, Morocco

INCLUDE US! Good practices in the inclusion of persons with disabilities in Myanmar

HUMANITY & INCLUSION (HI)
2018

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In 2015, Humanity & Inclusion HI began the project: “Empowering persons with disabilities to contribute to equal access to basic social services and local policymaking processes in under-resourced areas of Ayeyarwady and Mandalay”. The project supported Disabled Peoples Organizations and other civil society groups to participate in the development of inclusive regional policies and programmes, and to promote good practices contributing to greater access to services for persons with disabilities. An aim was also to document, publish and disseminate these good practices throughout Myanmar, increasing awareness and understanding in order to sensitise people to disability inclusion and influence policy change. Rather than focusing on what is not working, this report seeks to shift attention to what has worked locally and how it could be replicated in other parts of the country, providing constructive, practical recommendations to decision-makers, service providers and other community groups in Myanmar. The report is related to two projects. The second is “Advocacy for Change: Fostering protection and rights of men and women with disabilities in Myanmar”. 

 

There are global recommendations. There are seven good practices:

  • Related to education:  Case Study I: Promoting Inclusion of children with disabilities in Middle Schools of Ayartaw. Case Study II: How the development of the teacher training promotes inclusion of all children in education
  • Related to economic life: Case Study III: How partnerships between private companies and organizations of people with disabilities can improve access to employment and vocational training
  • Related to social/community life: Case Study IV: Giving the Myanmar Deaf Community access to information.  Case Study V: How parental advocacy can make a difference
  • Related to political life: Case Study VI: Community advocacy in obtaining the National Registration Card. Case Study VII: Supporting people with disabilities to participate in Myanmar elections

 

Global report: Self-Advocacy for inclusion

INCLUSION INTERNATIONAL
November 2016

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Across the Inclusion International network, many individuals and organisations took part in workshops, surveys and interviews to report:

  • what self-advocacy means to them
  • what good support is 
  • how organisations can be more inclusive
  • the vital role that families play in empowering self-advocacy.

This report provides a snapshot of work, and has some useful information for self-advocates, supporters, organisations and families. As well as containing the results from the global survey, interviews and workshops, this report also provides some useful guidance for anyone who wants to make the world more inclusive for people with intellectual disabilities.

 

A website (www.selfadvocacyportal.com) has been developed to share good practice and resources.

Best Practice Guides for professional supporting autistic students in Higher education. Guide 1: Best practice for HEI managers and senior academics

FABRI, Marc
ANDREWS, Penny
PUKKI, Heta
March 2016

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This guide is for managers and senior academics at universities and higher education institutions, to provide with information and evidence to help develop policies and practices that will benefit autistic students and improve the student experience. It was developed from work in five European countries. It is one of three guides to help higher education professionals support autistic students.

Parent peer advocacy, information and refusing disability discourses

BELL, M
FITZGERALD, R
LEGGE, M
2013

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Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

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This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

Parent’s participation in the social inclusion of children with disabilities in Bosnia and Herzegovina and Croatia

BECIREVIC, Majda
DOWLING, Monica
February 2012

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"This study examines the attitudes and actions of parents of children with disabilities in Bosnia and Herzegovina (BiH) and Croatia. Part of the former Yugoslavia, these two Southeastern European countries have undergone major economic and socio-political changes since the early 90s. Historically disabled children with disabilities suffered high levels of social and educational exclusion in these countries whereas now a public discussion of inclusion and children’s rights prevails"

Inter-agency guiding principles on unaccompanied and separated children

INTERNATIONAL COMMITTEE OF THE RED CROSS (ICRC)
et al
January 2004

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This publication outlines the guiding principles which form the basis for action when children are unaccompanied, become separated from their families or other adults who they know, or are orphaned in disaster situations, armed conflicts or other crises. The guiding principles are intended primarily for national, international and non-governmental organizations and other associations concerned with separated children. They are also designed to assist governments and donors in meeting their obligations and taking funding decisions

Family action for inclusion in education

ENABLING EDUCATION NETWORK (EENET)
2002

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This publication contains stories of family-based advocacy organisations which have helped to transform education systems in southern Africa, South Asia, Europe and Australia. Quotes from family and community members provide valuable insights into the activities, thoughts and feelings of parents involved in fighting for the inclusion of their disabled children. The guide is especially useful for family and community members who may feel isolated and want to form a support group or advocacy organisation, and also for teachers, teacher educators and policy-makers

Hepatitis B vaccine introduction : lessons learned in advocacy, communication, and training

WITTLETT, Scott
January 2001

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Hepatitis B is especially dangerous for infants, since they may carry the infection for the rest of their lives without knowing it. Chronic carriers can infect others and are at risk of serious liver disease in later life. However, the hepatitis B vaccine, if provided, helps protect infants against these problems. The vaccine's introduction to developing countries only began in the late 1980s, but many countries still cannot afford to administer the vaccine to all children. This paper summarises the lessons learned about effective advocacy with decision makers, communication with parents and caretakers, and training health staff regarding hepatitis B, gained from over ten years of experience introducing hepatitis B vaccine worldwide. It also includes the WHO 'aide-memoire' on hepatitis B

The standard rules on the equalization of opportunities for persons with disabilities

UNITED NATIONS GENERAL ASSEMBLY
1994

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The standard rules on the equalisation of opportunities for persons with disabilities have been developed on the basis of the experience gained during the United Nations Decade of Disabled Persons (1983- 1992). Although the rules are not compulsory, they can become international customary rules when they are applied by a great number of states with the intention of respecting a rule in international law. They imply a strong moral and political commitment on behalf of States to take action for the equalisation of opportunities for persons with disabilities. The rules indicate important principles for responsibility, action and cooperation as well as areas of decisive importance for quality of life and for the achieving of full participation and equality. The rules offer disabled persons and their organisations an instrument for making policy and for action. They also provide a basis for technical and economic cooperation among states, the United Nations and other international organisations

Independent Living Institute Virtual Library

INDEPENDENT LIVING INSTITUTE

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A virtual library containing references and access to full text documents from around the world on independent living and related themes: for example women with disabilities, international access solutions and disability and development. Materials cited include reports, resource kits, training manuals, conference papers and journal articles. The database can be searched by author, by selecting a topic from a list of categories such as international development, human rights or UN documents, or by performing a free search. Search results are ranked to indicate best match to search query. There is also a database of organisations and companies working in the disability field

National Head Start Association

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Created in 1965, Head Start is a long-running, national school readiness program in the United States. It provides comprehensive education, health, nutrition, and parent involvement services to low-income children and their families. Nearly 25 million pre-school aged children have benefited from Head Start. The National Head Start Association is a private not-for-profit membership organisation dedicated exclusively to meeting the needs of Head Start children and their families. This website contains a wealth of resources, tools, and information materials around school readiness, training and advocacy

Violence and abuse towards persons with disabilities

AMICI DI RAOUL FOLLEREAU (AIFO)

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This website presents the workshop reports and presentations from the second part of an international workshop on "Going beyond the taboos in community-based rehabilitation (CBR)." The workshop focused on violence and abuse towards persons with disabilities and role of CBR in preventing them and supporting the victims. Links are provided to the workshop report and presentations in pdf format
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

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