Community Based Rehabilitation of Persons with Disabilities

THE DIFFERENT PERSON The person whom you call blind, is different than you. He/She can see with the white cane, able to do everything, if he gets the chance. The person whom you call lame, is different than you. He/She can walk with the crutches, able to sing and dance. The person whom you call deaf or dumb, is different than you. He/She can work like others, able to hear and talk nicely. The person whom you call mad, is different than you. He/She can follow and judge, able to feel the pain and joy. —Shah Alam Liton

Community Based Rehabilitation of Persons with Disabilities

S PRUTHVISH MD DNB (Community Medicine) Professor of Community Medicine MS Ramaiah Medical College Bangalore, India

Formerly Coordinator Disability Research and Training, ActionAid India

JAYPEE BROTHERS MEDICAL PUBLISHERS (P) LTD New Delhi

Published by Jitendar P Vij Jaypee Brothers Medical Publishers (P) Ltd EMCA House, 23/23B Ansari Road, Daryaganj New Delhi 110 002, India Phones: +91-11-23272143, +91-11-23272703, +91-11-23282021, +91-11-23245672 Fax: +91-11-23276490, +91-11-23245683 e-mail: [email protected] Visit our website: www.jaypeebrothers.com Branches • 202 Batavia Chambers, 8 Kumara Krupa Road, Kumara Park East Bangalore 560 001, Phones: +91-80-22285971, +91-80-22382956, +91-80-30614073 Tele Fax: +91-80-22281761 e-mail: [email protected] • 282 IIIrd Floor, Khaleel Shirazi Estate, Fountain Plaza Pantheon Road, Chennai 600 008, Phones: +91-44-28262665, +91-44-28269897 Fax: +91-44-28262331 e-mail: [email protected] • 4-2-1067/1-3, Ist Floor, Balaji Building, Ramkote Cross Road, Hyderabad 500 095, Phones: +91-40-55610020, +91-40-24758498 Fax: +91-40-24758499 e-mail: [email protected] • 1A Indian Mirror Street, Wellington Square Kolkata 700 013, Phones: +91-33-22456075, +91-33-22451926 Fax: +91-33-22456075 e-mail: [email protected] • 106 Amit Industrial Estate, 61 Dr SS Rao Road, Near MGM Hospital Parel, Mumbai 400 012, Phones: +91-22-24124863, +91-22-24104532, +91-22-30926896 Fax: +91-22-24160828 e-mail: [email protected] • “Kamalpushpa” 38, Reshimbag, Opp. Mohota Science College, Umred Road Nagpur 440 009, Phone: +91-0712-3945220 Community Based Rehabilitation of Persons with Disabilities © 2006, S Pruthvish All rights reserved. No part of this publication should be reproduced, stored in a retrieval system, or transmitted in any form or by any means: electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the author and the publisher. This book has been published in good faith that the material provided by author is original. Every effort is made to ensure accuracy of material, but the publisher, printer and author will not be held responsible for any inadvertent error(s). In case of any dispute, all legal matters to be settled under Delhi jurisdiction only. First Edition: 2006 ISBN

81-8061-609-6

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This book is dedicated to persons with disability and written for students of physiotherapy and students of medicine and allied sciences in the third world to help to improve the lives of persons with disability by developing a perspective towards CBR and to my beloved mother who fought against low vision with pride and dignity till end .

Preface Community Based Rehabilitation (CBR) for, of and by persons with disabilities is proposed by world bodies like World Health Organization as a cost-effective approach towards rehabilitation. The joint statement of WHO, ILO, UNESCO clearly delineates concepts and principles of CBR. Physiotherapists constitute a major human resource, which is yet to be tapped for CBR optimally. There is need to bring in the approach of CBR in every facet of their work. Then only it will be possible to reach 2.13 percent of the population of India who are disabled, about 74 percent of them living mostly in villages and slums, according to Census of India 2001. It is a good step that Health Universities in India have a subject in CBR for students of Physiotherapy. While it will be possible to introduce CBR through this way, more will be gained if attempts are made by Physiotherapy Colleges and teachers of Physiotherapy to develop demonstration projects in the proximity of their institutions. This will help making learning of CBR easier, more meaningful and useful to students. Indeed, I feel that teaching of CBR should be reflected in all aspects dealt with in the entire curriculum of Physiotherapy course. CBR provides an opportunity for institutions and teachers of Physiotherapy to be role models and express their social accountability in teaching, research and service and empowerment areas of their work. The book is designed to meet the requirements of undergraduate students of Physiotherapy of Indian Universities and I understand it is a maiden attempt in the developing world. I request the faculty and students to help me with their critical comments and suggestions to improve this first edition. Meeting the syllabus of Indian Universities for undergraduate students in CBR, it addresses to cover areas of History of Rehabilitation, Disability – definition and classification, Disability Identification, Disability Prevention, Early Identification and Early Intervention, Concepts, Principles and Components of Community Based Rehabilitation, Planning and Implementation of CBR, Supervision, Monitoring and Evaluation of CBR, Resources for CBR and Disability Rehabilitation, Legislations, Aspects of Vocational Training and Employment, Role of Physiotherapists in CBR. Assignments and practical learning exercises in CBR are also suggested. With useful case studies and illustrations, it is hoped that the book will sensitize the students and faculty of Physiotherapy to adopt CBR approach in their work. The book will be useful for students of Medicine and Nursing to gain more knowledge about Community Based Rehabilitation. Many of my friends feel its usefulness for NGO sector too – for implementation.

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COMMUNITY BASED REHABILITATION OF PERSONS WITH DISABILITIES

I am grateful to Sri BR Prabhakara, Chief Executive GEF- Health Sciences, Dr KN Sharma, Executive Director, GEF- Health Sciences, Dr Mrs MR Sandhya Belawadi, former Principal and Dean, MSRMC and MSRMTH, Dr S Kumar, Principal, MSRMC and Dean MS Ramaiah group of Hospitals, Dr AC Ashok, Registrar, MS Ramaiah Medical College for the encouragement and support. The book has seen the light of the day because of the support I received from Dr K Jayanth Kumar, Professor and Head, Dept.of Community Medicine, Dr D Gopinath, Professor of Community Medicine, Mr NSN Murthy, Associate Professor (Medical Statistics) my colleagues – Dr Renuka, Dr M Dayanand, Dr NSR Gowda, Dr Ravish, Dr Hemanth T, Dr G Suman, Dr Lalitha, Mr. Shivaraj, Mrs.Bhuvaneswari and all PG Students – Dr Pushpa Naik, Dr Satheesh, Dr Chethan, Dr Farah, Dr Arjun, Dr Jyothi, Dr Shashikala, Dr Riyaz, Dr Raguhurm, Dr Sudeep Dr Sridevi and Dr Nandakumar. A large number of people, friends, and experts have helped me do this work – by suggestions and criticisms. I have tried to list in the acknowledgement. I am grateful to ActionAid India for the opportunity to have the experience of CBR and Dept. of Community Medicine, MS Ramaiah Medical College and Gokula Education foundation for giving me adequate leave to work for this book as well continue my commitment and interest in CBR I am indebted to Shri Jitendar P Vij, Chairman and Managing Director, Mr.Tarun Duneja, General Manager, Publishing of M/s Jaypee Brothers Medical Publishers (P) Ltd. and Mr Manjunath Hegde, Author-Coordinator, Bangalore Branch and the entire team for the opportunity to me to reach students of Physiotherapy which was my long cherished ambition, as well as highly professional work they have put in. I fall short of words to thank my wife Jyothi, daughter Sindhu, son Sachin, my beloved mother for helping me complete the task and for having tolerated my non-availability to them now and then.

Banda Ache Indonesia

S Pruthvish

Acknowledgements This work is because of the need expressed by the Principals of Physiotherapy colleges during interactions with them during the period 1999 and 2001. Dr Vasudev, Principal of Sri Padmashri Institute of Physiotherapy, Dr Vasudev, Principal of Sri Kempegowda Institute of Physiotherapy Dr Krishna Kumar and Principal of Infant Jesus College of Physiotherapy, Mrs. Shashikala of JSS College of Physiotherapy expressed need for developing a useful book on Community Based Rehabilitation for Students of Physiotherapy and Dr Savitha, Principal of MS Ramaiah College of Physiotherapy. Dr DK Srinivas of RGUHS, Dr C. Shivaram, Principal, Vaidehi Institute of Medical Sciences and Dr N. Girish, Assistant Professor of Epidemiology enthused me to accept work of this kind. The exposure I had in ActionAid India during the period 1992 to 2001 as Coordinator of Disability Research and Training gave me confidence to take up this task and Dr Krishna Kumar enthused me take it up and to work it up fast, as well referred my name to the publishers Jaypee Brothers Medical Publishers. I am grateful to him for the confidence had on me. I am grateful to Dr Maya Thomas, Former Director of Disability Division of ActionAid India who introduced me to the area of Community Based Rehabilitation. Mr T.V. Sreenivasan, President of Sri Ramana Maharishi Academy for the Blind, Bangalore and Mr KR Rajendra, Training and Development Officer of eastern region of Leonard Cheshire International who opened up their field projects for learning, curriculum development for CBR workers and gave freedom without any kind of barriers, Mr Ravi Narayan, Mr Salil Shetty, Dr Amitava Mukherjee and Mr Harsh Mander, successive Country Directors of ActionAid India for the freedom I enjoyed in knowing about CBR, meeting people within the country and abroad. I am thankful to Mr Mahadevan, Mr Jagabandhu Acharya, Dr Prashant K Tripathy and successive Directors of Disability Division of ActionAid India who gave me opportunity to apply my community health knowledge to Community Based Rehabilitation. Victor Cardoza, Kevin Noronha, Nishitha D’Souza, Susan Thomas Nithila Bhaskaran, Divya Singh, Raghav, Lalitha and Seetharam, my collegues who adjusted with me while I was in ActionAid and gave all cooperation to learn about CBR and supported me to contribute to designing curricula and training programmes for the prestigious International Training Programme on CBR for Programme Managers and Six month CBR Worker’s course which is being held in CBR Tharabethi at Sourabha CBR Project of Sri Ramana Maharishi Academy for the Blind. I remember with gratitude the support I received from Mr Chapal Khasnabis of Mobility India presently with WHO, Geneva; Mr R. Ramachandran, Executive Director of ADD India; Mr DM Naidu of Basic Needs, Mrs. Rukmini Krishnaswamy, Director of Spastic Society of Karnataka; Dr N. Rathna, Director of All India Institute of Speech and Hearing, Mysore;

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COMMUNITY BASED REHABILITATION OF PERSONS WITH DISABILITIES

Dr G. Gururaj, Professor and Head, Epidemiology, NIMHANS and Dr SP Tekur, Paediatrician, Bangalore who enhanced my knowledge while designing the training programmes and conducting training too. Needless to say confidence and independent living of Ms CN Janaki, Ms Madhu Singhal and Mr Venkatesh made me compile information and work for this book. Project partners of ActionAid India, CAPART, Government of India, Govt. of Karrnataka from across the country opened up for me, extended all support for my learning during my days of ActionAid India. Nothing is mine in this book. I have collected information from my notes, experiences, books, journals, evaluation reports from various sources, which has been appropriately acknowledged in each section. The chapter on “CBR Concepts and Principles” is outcome of my discussions with and material provided by Mr Ramachandran of ADD India, Mr KR Rajendra of Leonard Ceshire International, my interactions with various friends from UNESCAP, WHO, AIFO, ILO, Council for Advancement of People’s Action and Rural Technology (CAPART), UNDP, many CBR workers and persons with disability of CBR projects over the years. The Annexure II on Identification and Needs Assessment of Persons with Disabilities is largely derived from my experiences during multicentric studies conducted across the country during the period 1992-93 and from the Monograph “Identification and Needs Assessment of Beneficiaries in CBR Initiatives“ by Dr Maya Thomas and Dr S. Pruthvish, published by ActionAid India during 1994. All my Postgraduates in the Department of Community Medicine have helped me. I appreciate their help – I specially like to mention Dr Pushpa Naik, Dr Chethan, Dr Shashikala, Dr Arjun Isaac, Dr Satheesh, Dr Nandakumar, Dr Farah, Dr Jyothi and Dr Riyaz Ahmed. Dr KN Sharma, our beloved Executive Director of Gokula Education Foundation, Health Sciences has been nurturing us to initiate CBR through Primary Health Care in Kaiwara PHC area. I am personally grateful to him. I am thankful to Dr Mrs. Sandhya Belawadi, Former Principal, MSRMC and Dean, MSRMTH for expanding my vision to work for HIV/AIDS. I indebted to Dr S Kumar, Principal, MSRMC and Dean, MS Ramaiah Medical College and Hospital and Mr BR Prabhakara IAS (Retd) and CEO of Gokula Education Foundation, Bangalore. This book is seeing the light of the day when one of my ambitions is being fulfilled— initiation of a CBR endeavor. Dr Madan Upadhyaya, former Regional Adviser—Injury Prevention, Disability and Rehabilitation, SEARO, WHO and Dr S Ramboot, former Regional Advisor, non-communicable Diseases and Mental Health, WHO, SEARO has been providing technical and financial support to this endeavor. I fall short of words to thank Dr K. Jayanth Kumar, Professor and Head, Community Medicine for sharing my vision towards developing a CBR endeavor in Kaiwara PHC area, and permitting me to avail leave to complete this work. I am immensely thankful to Dr D. Gopinath, Professor of Community Medicine for being with me for its implementation

ACKNOWLEDGEMENTS

XI

and to enlarge my vision to include Chronic Care, I am grateful to MSRMC for giving me opportunity to place the agenda of CBR in the field practice area of MS Ramaiah Medical College, Bangalore. I am especially indebted to Dr T. Hemanth, Dr Ravish, Dr M. Dayanand, Dr Mrs. Renuka Prithviraj who stood with me and continuing to do so. Experience at Kaiwara augured my enthusiasm to devote time and energy to pool my experiences. Mr NSN Murthy, Associate Professor, Statistics, Department of Community Medicine, MSRMC has been of lot of support to initiate the CBR endeavor in Kaiwara PHC area. I am grateful to my wife Jyothi, children Sindhu and Sachin, and my mother for tolerating my non-availability to them adequately during the preparation of this work. Jyothi helped me write/edit suggest changes throughout. It was a great support for me for the book to reach this stage. It would have not been possible to contemplate without her patience, respect and love for me. I am thankful to Ms. Soumya Gaurav, student of Physiotherapy in MS Ramaiah Medical College who carried the message of CBR to students of Physiotherapy in Kempegowda Institute of Physiotherapy and who is remotely responsible for making me work on this book. She responded to my calls to learn about CBR while she was an undergraduate student. I immensely thank the Chairman and Managing Director of Jaypee Brothers Medical Publishers, Shri JP Vij for making this book available to students of Physiotherapy. I am confident that this will help the students to develop a perspective towards CBR approach in their work and will enable them to develop compassion and will make lives of persons with disability easier. I am thankful to Anil, Theju, Vanditha and team for the preparation of drafts.

Contents 1. History of Rehabilitation of Persons with Disability .................................................... 1 2. Disability: Definition and Classification ............................................................................. 6 3. Prevention of Disabilities ........................................................................................................ 14 4. Disability Identification ........................................................................................................... 22 5. Early Identification and Early Intervention for Disabilities ...................................... 36 6. Concept, Principles, Components of Community-based Rehabilitation ................ 41 7. Planning and Implementation of Community-based Rehabilitation ...................... 58 8. Supervision, Monitoring and Evaluation of Community-based Rehabilitation ............................................................................................................................... 74 9. Resources for CBR and Disability Rehabilitation .......................................................... 89 10. Legislations ................................................................................................................................. 117 11. Vocational Training and Employment of Persons with Disability ....................... 126 12. Role of Physiotherapists in Community-based Rehabilitation of Persons with Disabilities ....................................................................................................... 133

Annexures .......................................................................................................................................... 137 Index ................................................................................................................................................... 221

1

History of Rehabilitation of Persons with Disability

LEARNING OBJECTIVES At the end of the learning session, the learners must be able to appreciate and list milestones in the history of rehabilitation of disabled in the country. OUTLINE OF THE CONTENT • • • • • • • •

Epics/Legends Ridicule Charity and government support Effects/developments during World War II Independent living movement Institution-based rehabilitation Community-based rehabilitation Prejudice to dignity

SUGGESTED METHODOLOGY • •

Lecture/discussion: Arranging oration by eminent people who have worked for disability issues. Watching the films: My Left Foot/Koshish/Heidi/Beautiful Mind.

PRE/POST EVALUATION • • •

List disabled people from Epics/History How disabled people’s needs were addressed in the past? List important milestones of development.

HISTORY OF REHABILITATION In Mahabharath, renowned emperor of Hasthinapura, Dhritharashtra was blind. Shakuni was lame. In Hindu purana—Aruna, the Sarathi (driver) of Sun God was deprived of both his limbs, but was the fastest driver of the chariot of Sun God.

S Pruthvish MD DNB (Community Medicine) started his career as a rural doctor in Mallur Village in Karnataka, India. He served as faculty of Community Medicine at St. John’s Medical College, Bangalore from 1984. He had the opportunity to Coordinate Research and Training initiatives related to Community Based Rehabilitation for ActionAid India and closely associated with designing Six Months Training Course for CBR workers and International Course on CBR for Programme Managers from 1992 till 2001. Dr Pruthvish was a member of Thematic Working Group on Disability Related Concerns UNESCAP, Bangkok representing ActionAid India from 1996 to 2001. He was on the Editorial Board of ActionAid Disability News from 1996 to 2001. He teaches at MS Ramaiah Medical College, Bangalore and is closely associated with carving out a community-based rehabilitation programme – Ashakirana- in 36 villages of Kaiwara Primary Health Centre area exploring possibilities of integration of CBR in Primary Health Care in an initiative of MSRMC and WHO, SEARO. At the time of publication of this book he is on a short-term assignment with WHO—Indonesia, working in Tsunami affected areas in Banda Ache.

ISBN 81-8061-609-6

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