Childhood disability issues and implications for an effective rehabilitation process E-Book

Marta Prota

• Herausgeber: EDUCatt
• Kategorie: Bildung
• Sprache: Englisch
• Veröffentlichungsjahr: 2015

Beschreibung

Disability, and specifically childhood disability, is an issue that is evolving and which recently met worldwide interest in both developed and developing countries. After the enactment of the Convention on Rights for Persons with Disability (CRPD) in 2006, many moves have been made toward the establishment of disabled children’s rights, both on international and national panoramas, but there is still a long way to go, primarily for complete and effective inclusion in their local community. Working with children with special needs means working with disability; working with disability means firstly knowing that it is a multi-factor and multi-faceted experience that every person could potentially experience during his life. Because of the complexity and the plurality of the topic, we are going to focus on two specific aspects of disability. Firstly, the side related to culture, which means the different perspectives, meanings and connotations that the concept of disability has in different cultural, social and economic conditions, starting from the definition of disability itself. Secondly, we are going to focus on the rehabilitation process, not limiting this to technical considerations (such as physical therapy, occupational therapy, speech therapy and so on) but investigating the essential role that the disabled child’s family plays in the process of rehabilitation and the consequent need to build successful cooperation with them. What link is there between disability and rehabilitation? The goal of rehabilitation is to restore an individual’s ability to his/her normal or near-normal functional capabilities after the occurrence of a disabling event. So rehabilitation is a tool through which it is possible to reduce the impact of disability in a person’s life. But very often some disability is going to remain, and this is truer in childhood rehabilitation, since disabling diseases that affect children are very complex and involve many different body functions. In this situation, the compliance and the understanding of the family is crucial to obtain maximum results from rehabilitation. A realistic but non-cruel picture of the situation, shared goals, good levels of communication and feedback are essentials components for good results. The aim of this handbook is to provide basic but indispensable tools for reaching them. Tratto dall'Introduzione

Leseprobe

Acknowledgments

I’m very grateful to professor Rita Sidoli for giving to me the opportunity to write this volume and for her precious guidance.

A very special thanks to Ms. Daniela Amici, an excellent professional and a wonderful mother, for her contribution to this manual.

A very special thanks to my husband for his support and enthusiasm.

A very special thanks to Ms. Penelope Arnold for her precious work for the linguistic text revision.

© 2012 EDUCatt – Ente per il Diritto allo Studio Universitario dell’Università Cattolica

Largo Gemelli 1, 20123 Milano – tel. [phone] – fax [phone]

e-mail: [email protected] (produzione); [email protected] (distribuzione)

web: www.educatt.it/libri

isbn edizione cartacea: 978-88-8311-915-6

isbn edizione cartacea: 978-88-6780-726-0

copertina: progetto grafico Studio Editoriale EDUCatt

Indice

Introduction and purpose

Chapter 1Disability and cultures

1.1 An international perspective

1.2 The “relative” side of disability

1.3 The “absolute” side of disability

1.4 Explaining disability: causes and consequences

1.5 Disability and Rehabilitation

1.6 Questions

Chapter 2Involving the family in the rehabilitation program

2.1 Dialoguing with the family

2.2 Models for communication

2.3 Setting the right goals

2.4 Role locking

2.5 Living and training

2.6 The importance of feedback

2.7 Some general comments

2.8 Questions

Chapter 3Beyond rehabilitation

3.1 Beyond rehabilitation

3.2 A model of social inclusion

3.3 Questions

Conclusion

Bibliography

Introduction and purpose

Disability, and specifically childhood disability, is an issue that is evolving and which recently met worldwide interest in both developed and developing countries. After the enactment of the Convention on Rights for Persons with Disability (CRPD) in 2006, many moves have been made toward the establishment of disabled children’s rights, both on international and national panoramas, but there is still a long way to go, primarily for complete and effective inclusion in their local community.

Working with children with special needs means working with disability; working with disability means firstly knowing that it is a multi-factor and multi-faceted experience that every person could potentially experience during his life. Because of the complexity and the plurality of the topic, we are going to focus on two specific aspects of disability. Firstly, the side related to culture, which means the different perspectives, meanings and connotations that the concept of disability has in different cultural, social and economic conditions, starting from the definition of disability itself. Secondly, we are going to focus on the rehabilitation process, not limiting this to technical considerations (such as physical therapy, occupational therapy, speech therapy and so on) but investigating the essential role that the disabled child’s family plays in the process of rehabilitation and the consequent need to build successful cooperation with them. What link is there between disability and rehabilitation? The goal of rehabilitation is to restore an individual’s ability to his/her normal or near-normal functional capabilities after the occurrence of a disabling event. So rehabilitation is a tool through which it is possible to reduce the impact of disability in a person’s life. But very often some disability is going to remain, and this is truer in childhood rehabilitation, since disabling diseases that affect children are very complex and involve many different body functions. In this situation, the compliance and the understanding of the family is crucial to obtain maximum results from rehabilitation. A realistic but non-cruel picture of the situation, shared goals, good levels of communication and feedback are essentials components for good results. The aim of this handbook is to provide basic but indispensable tools for reaching them.

Chapter 1 Disability and cultures

1.1 An international perspective

What is disability? There still isn’t today, from an international perspective, a single and universally accepted definition of disability. Even the UN “Convention on the Rights of Persons with Disability”(2006), which is one of the biggest contemporary effort for the analysis of disabilities and for the protection of the fundamental rights of disable people, did not manage to come up with a definition of disability. For this reason in the cited document and its Optional Protocol, disability is defined in a “open” way in the Preamble «(...) Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hindertheir full and effective participation in society on an equal basis with others (...)».