About the Author

Bupinder Zutshi, Ph. D., Center for the Study of Regional Development, Jawaharlal Nehru University, New Delhi, India. Email: bzutshi@vsnl.com, Phone: 011-31067803

Currently teaching at Centre for the Study of Regional Development, Jawaharlal. Nehru University, New Delhi, has more than 25 years of teaching experience at post-graduate and research level. Has taught at Utkal University, Kashmir University and Jawaharlal Nehru University. His fields of interest include population studies, child labour, child education, gender studies and regional development. Has published four books and several research articles in journals of repute. Has completed several research and field action oriented projects on child education, child labour, Non-formal education, gender studies and disabled population. These projects were sponsored by the UNESCO (New Delhi), UNESCO:IBE (Geneva), United Nations High Commissioner for Human Rights (Geneva), International Labour Organization (New Delhi), the National Human Rights Commission of India, the Policy Science Center, Inc., funded by the Learning and Research Program on Culture and Poverty of the World Bank, the Ford Foundation and the Indian Council of Social Science Research.

Research Associate:
P.K.Prasad
Aruna Rai

Research Assistants:
P.P. Tripathi,
A.K. Kapoor

Computer Assistance:
Satyendra Kumar
Anish Kapoor

Cartographic Assistance:
Puspahas Panigrahi

Abbreviations and Acronyms

Abbreviations

Name

ADA

American Disability Act

ADDA

Australian Disability Discrimination Act

ADDI

Action for Ability Development and Inclusion

ADHD

Attention Deficit and Hyperactivity Disorder

ADIP

Assistance to Disabled Persons for Purchase/ fitting of Aids and Appliances

AJRRC

Amar Jyoti Research and Rehabilitation Center

AK

Asha Kiran

ALIMCO

Artificial Limb Manufacturing Corporation of India

AP

Akshay Pratishthan

ATC

Adult Training Center

B.Ed.

Bachelor of Education

B.Sc.

Bachelor of Science

BDDA

British Disability Discrimination Act

CACU

Central Administrative and Coordination Unit

CAN

Concerned Action and Now

CCPD

Chief Commissioner for Persons with Disability

CF

Cystic Fibrosis

CP

Cerebral Palsy

CRCs

Composite Regional Centers

CRCs

Composite Regional Centers for Persons with Disability

CSE

Center for Special Education

DDA

Delhi Development Authority

DDRCs

Districts Rehabilitation Disability Centres

DGET

Directorate General of Employment &Training

DIN

Disability India Network

DRCs

District Rehabilitation Centers

FOD

Family of Disabled

HI

Hearing Impairment

HM

Home Management

IAY

Indira Awaas Yojana

IB

Institute for the Blind

ICDS

Integrated Child Development Schemes

ICIDH

International Classification of Impairments, Disabilities and Handicaps

IEDC

Integrated Education for the Disabled Children

IJDR

Indian Journal on Disability and Rehabilitation

ILO

International Labour Organization

IPH

The Institute for the Physically Handicapped

ISIC

Indian Spinal Injury Center

ITIs

Industrial Training Institutes

LC

Locomotor Impairment

MD

Medical Disabilities

MESH

Maximizing Employment to Serve the Handicapped

MI

Mental Illness

MOU

Memorandum of Understanding

MR

Mental Retardation

NAB

National Association for the Blind

NCPEDP

The National Center for Promotion of Employment for Disabled Persons

NCT

National Capital Territory

NDMC

New Delhi Municipal Corporation

NGO

Non-Governmental Organization

NHFDC

National Handicapped Finance and Development Corporation

NICDR

National Information Center on Disability and Rehabilitation

NIDRR

National Institute of Disability and Rehabilitation Research

NIHH

National Institute for the Hearing Handicapped

NIMH

National Institute for the Mentally Handicapped

NIOH

National Institute for the Orthopaedically Handicapped

NIRTAR

National Institute of Rehabilitation Training & Research

NIVH

National Institute for the Visually Handicapped

NSSO

National Sample Survey Organization

NTMRCP

Assistance to Organizations for Persons with Cerebral Palsy and Mental Retardation

ODA

Oversea Development Administration of United Kingdom

OH

Orthopeadically Handicapped

OPD

Out Patient Department

PWD

Persons with Disability Act 1995 India Equal Opportunity, Protection of Rights and Full Participation

RC

Resource Center

RCBR

Rural Community Based Service

RCI

Rehabilitation Council of India

RRCs

Regional Rehabilitation Centers

RRTCs

Regional Rehabilitation Training Centers

SGSY

Swarnjayanti Gram Swarozgar Yojana

SSNI

Spastics Society of Northern India

TA

Tamana Association

TDMM

Science and Technology Development Projects in Mission Mode

UCBR

Urban Community Based Rehabilitation

UNDP

United Nations Development Programme

UNESCO

United Nations Educational, Scientific and Cultural Organization

UNICEF

United Nations International Children's Fund

VI

Visual Impairment

VO

Voluntary Organizations

VRCs

Vocational Rehabilitation Centers

WHO

World Health Organization

Acknowledgements

I wish to put on record my gratitude to the Ford Foundation of India, New Delhi for having given me an opportunity to conduct the research study on the DISABILITY STATUS IN INDIA- A CASE STUDY OF DELHI METROPLOLITAN REGION

My deeep appreciation and sincere acknowledgements go to Professor K. Warikoo and Dr. Sharad. K. Soni from Himalayan Research and Cultural Foundation, New Delhi and Dr. Deepa Nag Haksar, Secretary, DIVA-India for providing all possible academic and administrative support and guidance in solving many financial and administrative problems from time to time.

I am deeply indebted to the Project Coordinators of Project - Applied Ethics Institute of India, Governing Body members of the Himalayan Research and Cultural Foundation and DIVA- India for making the necessary arrangements to carry out the research work. All members have been extremely cooperative, accommodative, and non-interfering throughout the period of study.

I am also grateful to members of Initiative for Social Change and Action, particularly to Professor C.J. Daswani, Professor Z. M. Shahid Siddiqui, Professor Tillottama Daswani, and Ms. Mariam Karim for their stimulating academic thoughts on disability sector in India. Dr. Mondira Dutta deserves a special thanks for being supportive at all stages including the organizing of the seminar and particularly drafting the proceedings of the seminar on Services for differently Abled Persons in India.

I am grateful to Justice Rajinder Sachhar (Ex-Chief Justice of Delhi High Court), Mr. Javed Abidi, Director, National Centre for Promotion of Employment for Disabled People (NCPEDP), staff and officials from Institute for Physically Handicapped and Vocational Rehabilitation Centre for Disabilities in Delhi and representatives from Civil Society Organizations like National Association for the Blind (New Delhi), Amar Jyoti, Hemophilia Federation, Institute of Public Opinion, Institute of Research and Action Planning, Awaaz Special School, DLDAV, Association of Kashmiri Samiti, Indian Social Institute, Manzil Welfare Society, SAI Pragya Institute, ADDI (Spastic Society of India), Delhi Brotherhood Society, Sadhu Vaswani School, Family of Disabled, SPANDAN, Blue Bell School, Delhi Association of Deaf, TWMR Special Institute, DOON Research and Rehabilitation Centre for Handicapped, Child Guidance Centre, ADHAAR, VIDYA, Spastic Society (Delhi) and Mass media, All India Radio and other print media for attending one day seminar organised by the AEII at India International Centre, New Delhi on 21st June 2003. .

I am grateful for the unrestrained support and cooperation showered upon my research team by the office staff of Rehabilitation Council of India, New Delhi, Ministry of Social Justice and Empowerment, Government of India, Department of Social Welfare, Government of NCT of Delhi, Office of the Chief Commissioner for persons with disability and NGOs associated with the services for disability sector in Delhi. I am thankful to the differently abled and challenged persons seeking services and support from different NGOs for enriching our knowledge about disability challenges and prospects during the course of our interviews with them. Their support and cooperation was valuable to prepare the report.

I am thankful to my entire team who has tried hard to help me complete this study. Special mention needs to be made about Mr. P.K.Prasad, Aruna Rai, Sumit Arora, Ashok Kapoor, Praveen Kumar Choudhari, Anish Kapoor, Puspahas, P.P. Tripathi and other office staff of AEII, who spent months together in the field supervising the survey work.

Last but not the least my sincere thanks go to my children Aneesh and Ipshita for constant help, support and inspiration and helping me in designing the lay out of the presentation of this report.

Dr. Bupinder Zutshi

List of Contents

 

Title

i.

Disclaimer

ii

About the Author and the Team Members

iii.

Abbreviations

iv.

Acknowledgements

v.

Contents

vi

List of Tables

vii

List of Diagrams

vii

List of Maps

 

Preface

 

Executive Summary

Part-I

Disability- Definition, Types and International and National Initiatives

•  Section -1

Definitional Aspects

 

•  Section -2

Disability Types

 

•  Section -3

International Initiatives

 

•  Section-4

National Initiatives

PART-II

Disabled Person in India- Magnitude, Composition and Characteristics

•  Section-1

All Disabled -Magnitude and Characteristics

 

•  Section -2

Disabled Persons Types

•  Section -3

Locomotor Impaired Persons- Composition and Characteristics

•  Section-4

Hearing Impaired Persons- Composition and Characteristics

•  Section-5

Visually Impaired Persons- Composition and

Characteristics

•  Section-6

Speech Impaired Persons- Composition and Characteristics

•  Section-7

Mentally Impaired Persons- Composition and Characteristics

PART-III

Services and Facilities

•  Section-1

Disability Sector- Welfare Institutes

•  Section-2

Concession and Facilities

•  Section-3

Implementation Status of PWD-Act 1995

PART-IV

Delhi- Disability Magnitude and Services

•  Section-1

Delhi Metropolitan Region- Magnitude

•  Section-2

Services for Disabled Persons

•  Section-3

Voluntary Sector Support

•  Section-4

NGOs- Good Practice Initiatives

PART-V

Conclusions & Recommendations

 

References and Bibliography

PART-VI

Annexes

1. Delhi NGOs- Working for Disabled Persons

2. Delhi NGOs Selected for Survey

3. Questionnaire for NGOs

4. Questionnaire for Disabled Person

5. Surveyed Disabled Persons

6. Seminar Report

List of Tables

 

S. No.

Table No.

Table Name

Page No.

1

II.1.1

Disabled Population in India- Magnitude

 

2

II.1.2

Disabled Population in India Gender Distribution

 

3

II.1.3

Disabled Population in India Rural/ Urban Distribution

 

4

II.1.4

Disabled Population in India- Prevalence Rate

 

5

II.1.5

Disabled Population in India - Prevalence Rate- Age Groups

 

6

II.1.6

State wise Prevalence Rate Males, Rural/ Urban 1991-2002

 

7

II.1.7

State wise Prevalence Rate Females, Rural/ Urban 1991-2002

 

8

II.1.8

Disabled Population in India- Incidence Rate

 

9

II.1.9

Disabled Population in India - Incidence Rate- Age Groups

 

10

II.1.10

State wise Incidence Rate Males, Rural/ Urban 1991-2002

 

11

II.1.11

State wise Incidence Rate Females, Rural/ Urban 1991-2002

 

12

II.1.12

Number of Disabled Person in Disabled Households

 

13

II.1.13

Onset of Disability Since Birth

 

14

II.1.14

Severity of Disability

 

15

II.1.15

Disabled Population in India Age Distribution

 

16

II.1.16

Disabled Population in India Social Composition

 

17

II.1.17

Disabled Population in India Marital Status

 

18

II.1.18

Disabled Population in India Current Living Arrangements

 

19

II.1.19

Disabled Population in India Education Status

 

20

II.1.20

Disabled Population in India Usual Work Activity Status

 

21

II.1.21

Disabled Population in India Work Activity Status

 

22

II.1.22

Disabled Population in India Work Status Before and After Disability

 

23

II.2.1

Disabled Population in India Types and Magnitude

 

24

II.3.1

Locomotor Impaired Persons - Magnitude

 

25

II.3.2

Locomotor Impaired Persons Prevalence Rate

 

26

II.3.3

Locomotor Impaired Persons State wise Prevalence Rate, Males

 

27

II.3.4

Locomotor Impaired Persons State wise Prevalence Rate, Females

 

28

II.3.5

Locomotor Impaired Persons Prevalence Rate- Age Groups

 

29

II.3.6

Locomotor Impaired Persons Incidence Rate

 

30

II.3.7

Locomotor Impaired Persons Incidence Rate- Age Groups

 

31

II.3.8

Locomotor Impaired Persons- Age at Onset of Impairment

 

32

II.3.9

Locomotor Impaired Persons- Degree of Impairment

 

33

II.3.10

Locomotor Impaired Persons- Causes of Impairment

 

34

II.3.11

Locomotor Impaired Persons- Education Status

 

35

II.3.12

Locomotor Impaired Persons- Work Activity Status

 

36

II.3.13

Locomotor Impaired Persons- Work Activity Status After Disability

 

37

II.4.1

Hearing Impaired Magnitude

 

38

II.4.2

Hearing Impaired Prevalence Rate

 

39

II.4.3

Hearing Impaired State wise Prevalence Rate- Males

 

40

II.4.4

Hearing Impaired State wise Prevalence Rate- Females

 

41

II.4.5

Hearing Impaired Prevalence Rate Age Groups

 

42

II.4.6

Hearing Impaired Incidence Rate

 

43

II.4.7

Hearing Impaired Incidence Rate Age Groups

 

44

II.4.8

Hearing Impaired Age at Onset of Impairment

 

45

II.4.9

Hearing Impaired Degree of Impairment

 

46

II.4.10

Hearing Impaired Causes of Impairment

 

47

II.4.11

Hearing Impaired Educational Status

 

48

II.4.12

Hearing Impaired Work Activity Status

 

49

II.4.13

Hearing Impaired Work Activity Status- After Disability

 

50

II.5.1

Visually Impaired- Magnitude

 

51

II.5.2

Visually Impaired- Prevalence Rate

 

52

II.5.3

Visually Impaired Blind Persons State wise Prevalence Rate

 

53

II.5.4

Visually Impaired Low Vision Persons State wise Prevalence Rate

 

54

II.5.5

Visually Impaired Prevalence Rate- Age Groups

 

55

II.5.6

Visually Impaired Incidence Rate

 

56

II.5.7

Visually Impaired Incidence Rate- Age Groups

 

57

II.5.8

Visually Impaired Age at Onset of Impairment

 

58

II.5.9

Visually Impaired Degree of Impairment

 

59

II.5.10

Visually Impaired Causes of Impairment

 

60

II.5.11

Visually Impaired Educational Status

 

61

II.5.12

Visually Impaired Work Activity Status

 

62

II.5.13

Visually Impaired Work Activity Status After Disability

 

63

II.6.1

Speech Impairment- Magnitude

 

64

II.6.2

Speech Impairment- Prevalence Rate

 

65

II.6.3

Speech Impairment- State wise Prevalence Rate -Males

 

66

II.6.4

Speech Impairment- State wise Prevalence Rate - Females

 

67

II.6.5

Speech Impairment- Prevalence Rate- Age Groups

 

68

II.6.6

Speech Impairment- Incidence Rate

 

69

II.6.7

Speech Impairment- Incidence Rate- Age Groups

 

69

II.6.8

Speech Impairment- Age at Onset of Impairment

 

70

II.6.9

Speech Impairment- Degree of Impairment

 

71

II.6.10

Speech Impairment- Cause of Impairment

 

72

II.6.11

Speech Impairment- Educational Status

 

73

II.6.12

Speech Impairment- Work Activity Status

 

74

II.6.13

Speech Impairment- Work Activity Status After Disability

 

75

II.7.1

Mental Impairment- Magnitude

 

76

II.7.2

Mental Impairment- Prevalence Rate

 

77

II.7.3

Mental Impairment- Prevalence Rate- Age Groups

 

78

II.7.4

Mental Retardation- State wise Prevalence Rate

 

79

II.7.5

Mental Illness- State wise Prevalence Rate

 

80

II.7.6

Mental Impairment- Incidence Rate

 

81

II.7.7

Mental Impairment- Incidence Rate- Age Groups

 

82

II.7.8

Mental Impairment- Age at Onset of Impairment

 

83

II.7.9

Mental Retardation Degree of Impairment

 

84

II.7.10

Mental Impairment- Classification, Degree of MR

 

85

II.7.11

Causes Impairment- Cause of Impairment

 

86

II.7.12

Education Impairment- Educational Status

 

87

II.7.13

Mental Impairment- Work Activity Status

 

88

II.7.14

Mental Impairment- Work Activity Status After Disability

 

89

III.1.1

Rehabilitation of Persons with Disabilities - Performance of VRCs

 

90

III.1.2

Performance of District Rehabilitation Centers

 

91

III.1.3

Aids and Appliance Support to Voluntary Organizations

 

92

III.1.4

Aids and Appliance Support to Voluntary Organizations- Expenditure Statements

 

93

III.1.5

Budget Allocations for Welfare of Disability sector in India

 

94

IV.1.1

Delhi Population -2001

 

95

IV.1.2

Delhi Population Growth- 1941-2001

 

96

IV.1.3

Delhi- Disabled Persons Projected Magnitude - 2001

 

97

IV.1.4

Delhi- Disabled Persons Prevalence Rate- 2002

 

98

IV.1.5

Delhi- Disabled Persons Incidence Rate- 2002

 

99

IV.1.6

Delhi- Disabled Households Distribution of Disabled Persons

 

100

IV.1.7

Delhi- Disabled Persons Degree of Impairment

 

101

IV.1.8

Delhi- Disabled Persons Education Levels

 

102

IV.1.9

Delhi- Disabled Persons Vocational Training Level

 

103

IV.2.1

Delhi- Education Training Courses Conducted by Government Organizations and NGOs.

 

104

IV.2.2

Delhi- Vocational Courses Conducted

 

105

IV.2.3

Delhi- NGOs Received Assistance from Government

 

106

IV.2.4

Delhi- Aids and Appliances Provided for Disability Sector

 

107

IV.2.5

Delhi- Concessions and Facilities Provided to Disabled Persons.

 

108

IV.3.1

Delhi- NGOs, Voluntary and Government Organization Surveyed

March 2003- December 2003

 

109

IV.3.2

Delhi - NGOs, Voluntary and Government Organization Surveyed- Disability Types, March 2003- December 2003

 

110

IV.3.3

Delhi Surveyed Organizations, Organizational Status

 

111

IV.3.4

Delhi Surveyed Organizations, Services Provided

 

112

IV.3.5

Delhi Surveyed Organizations, Infrastructure

 

113

IV.3.6

Delhi Surveyed Organizations, Services Required

 

List of Figures and Diagrams

S.No.

Fig. No

Title of the Figure

Page

1

II.1.1

Disabled Persons- Prevalence Rate- Age Groups

 

2

II.1.2

Disabled Persons- Incidence Rate- Age Groups

 

3

II.1.3

Disabled Households- Number of Disabled Persons

 

4

II.1.4

Disabled Persons- Severity of Disability

 

5

II.1.5

Disabled Persons- Age Distribution

 

6

II.1.6

Disabled Persons- Social Groups

 

7

II.1.7

Disabled Persons- Marital Status

 

8

II.1.8

Disabled Persons- Current Living Status

 

9

II.1.9

Disabled Persons- Educational Status

 

10

II.1.10

Disabled Persons- Usual Work Status

 

11

II.1.11

Disabled Persons- Work Activity Status

 

12

II.1.12

Disabled Persons- Work Status After Disability

 

13

II.2.1

Disabled Persons- Types of Disability

 

14

II.3.1

Locomotor Impaired Persons- Magnitude

 

15

II.3.2

Locomotor Impaired Persons- Prevalence Rate

 

16

II.3.3

Locomotor Impaired Persons-Prevalence Rate Age Groups

 

17

II.3.4

Locomotor Impaired Persons- Incidence Rate

 

18

II.3.5

Locomotor Impaired Persons-Incidence Rate Age Groups

 

19

II.3.6

Locomotor Impaired Persons-Age at Onset of Impairment

 

20

II.3.7

Locomotor Impaired Persons- Degree of Impairment

 

21

II.3.8

Locomotor Impaired Persons-Causes

 

22

II.3.9

Locomotor Impaired Persons- Education Status

 

23

II.3.10

Locomotor Impaired Persons- Work Activity Status

 

24

II.3.11

Locomotor Impaired Persons- Work Activity Status After Disability

 

25

II.4.1

Hearing Impaired Persons- Magnitude

 

26

II.4.2

Hearing Impaired Persons- Prevalence Rate

 

27

II.4.3

Hearing Impaired Persons-Prevalence Rate Age Groups

 

28

II.4.4

Hearing Impaired Persons- Incidence Rate

 

29

II.4.5

Hearing Impaired Persons-Incidence Rate Age Groups

 

30

II.4.6

Hearing Impaired Persons-Age at Onset of Impairment

 

31

II.4.7

Hearing Impaired Persons- Degree of Impairment

 

32

II.4.8

Hearing Impaired Persons-Causes

 

33

II.4.9

Hearing Impaired Persons- Education Status

 

34

II.4.10

Hearing Impaired Persons- Work Activity Status

 

35

II.4.11

Hearing Impaired Persons- Work Activity Status After Disability

 

36

II.5.1

Visually Impaired Persons- Magnitude

 

37

II.5.2

Visually Impaired Persons-Prevalence Rate Age Groups

 

38

II.5.3

Visually Impaired Persons-Incidence Rate Age Groups

 

39

II.5.4

Visually Impaired Persons-Age at Onset of Impairment

 

40

II.5.5

Visually Impaired Persons- Degree of Impairment

 

41

II.5.6

Visually Impaired Persons-Causes

 

42

II.5.7

Visually Impaired Persons- Education Status

 

43

II.5.8

Visually Impaired Persons- Work Activity Status

 

44

II.5.9

Visually Impaired Persons- Work Activity Status After Disability

 

45

II.6.1

Speech Impaired Persons- Magnitude

 

46

II.6.2

Speech Impaired Persons- Prevalence Rate

 

47

II.6.3

Speech Impaired Persons-Prevalence Rate Age Groups

 

48

II.6.4

Speech Impaired Persons- Incidence Rate

 

49

II.6.5

Speech Impaired Persons-Incidence Rate Age Groups

 

50

II.6.6

Speech Impaired Persons-Age at Onset of Impairment

 

51

II.6.7

Speech Impaired Persons- Degree of Impairment

 

52

II.6.8

Speech Impaired Persons-Causes

 

53

II.6.9

Speech Impaired Persons- Education Status

 

54

II.6.10

Speech Impaired Persons- Work Activity Status

 

55

II.6.11

Speech Impaired Persons- Work Activity Status After Disability

 

55

II.7.1

Mentally Impaired Persons- Magnitude

 

56

II.7.2

Mentally Impaired Persons-Prevalence Rate Age Groups

 

57

II.7.3

Mentally Impaired Persons-Incidence Rate Age Groups

 

58

II.7.4

Mentally Impaired Persons-Age at Onset of Impairment

 

59

II.7.5

Mentally Impaired Persons- Degree of Impairment

 

60

II.7.6

Mentally Persons-Causes

 

61

II.7.7

Mentally Persons- Education Status

 

62

II.7.8

Mentally Persons- Work Activity Status

 

63

II.7.9

Mentally Persons- Work Activity Status After Disability

 

64

IV.1.0

Delhi- Population Growth- 1901-2001

 

65

IV.1.1

Delhi- Disability Types - 2002

 

66

IV.1.2

Delhi- Disability Prevalence Rate- 2002

 

67

IV.1.3

Delhi- Disability Incidence Rate 2002

 

68

IV.1.4

Delhi- Disability Degree of Impairment 2002

 

69

IV.1.5

Delhi- Disabled Persons, Education Status 2002

 

70

IV.1.6

Delhi- Disabled Persons, Vocational Training Status 2002

 

71

IV.3.1

Delhi- Disability Organizations Surveyed- 2003

 

72

IV.3.2

Delhi- Disability Organizations Surveyed- Status- 2003

 

 

List of Maps

S.No.

Map.No

Title of the Map

Page No.

1

II.1.0

India- States

 

2

II.1.1

India - Disabled Persons- Prevalence Rate- Males

 

3

II.1.2

India - Disabled Persons- Prevalence Rate- Females

 

4

II.1.3

India - Disabled Persons- Incidence Rate- Males

 

5

II.1.4

India - Disabled Persons- Incidence Rate- Females

 

6

II.3.1

India- Locomotor Impaired - Prevalence Rate- Males

 

7

II.3.2

India- Locomotor Impaired - Prevalence Rate- Females

 

8

II.4.1

India- Hearing Impaired - Prevalence Rate- Males

 

9

II.4.2

India- Hearing Impaired - Prevalence Rate- Females

 

9-A

II.5.0

India- Visually Impaired- Prevalence Rate-1991

 

10

II.5.1

India - Blind Persons - Prevalence Rate- 2002

 

11

II.5.2

India - Low Vision Persons - Prevalence Rate- 2002

 

12

II.6.1

India- Speech Impaired - Prevalence Rate- Males

 

13

II.6.2

India- Speech Impaired - Prevalence Rate- Females

 

14

II.7.1

India- Mentally Retarded - Prevalence Rate- 2002

 

15

II.7.1

India - Mentally Ill- Prevalence Rate- 2002

 

16

III.1.1

India- National Institutes for Disability Sector

 

17

III.1.2

India- Regional and District Institutes for Disability Sector

 

18

IV.3.1

Delhi- Location of Surveyed NGOs/ Government/ Voluntary Organizations

 

Preface

The present study examines the conceptual and theoretical aspects of disability sector in India with a special focus on magnitude, prevalence rates, incidence rates, characteristics and composition of disabled person in India. Special focus has been given to identify available services and facilities for disabled persons through government and non-government organizations with special reference to Delhi Metropolitan region. The report has been divided into six parts excluding the executive summary, which presents main conclusions of the report for each part and also presents major recommendation of the report. The lay out of the report is substantiated with the help of tables, maps, figures and diagrams for easy visual understanding.

Part-I examines the definitional and conceptual aspects of disability. It identifies various disability type groups based on specific physical, sensory and learning characteristics. It also attempts to trace and analyses international initiatives undertaken for the welfare of disability sector during last 50 years. The last section of this part examines national initiatives through legislation and other affirmative actions and initiatives to focus disability agenda for pro-active measures.

Part-II has been divided into seven sections. Each section examines magnitude, composition and characteristics of different types of disability / impairments. The disabilities/ impairments covered are all disabled, locomotor impaired, hearing impaired, vision impaired, speech impaired and mentally impaired. It examines the NSSO data collected for the disabled person through a sample surveys during 47th and 58th round in 1991 and 2002 respectively. The analysis includes state wise, gender wise and rural/ urban distribution of disabled persons depicting their magnitude, prevalence rates, incidence rate, degree of impairment, causes for impairment and a in depth analysis of demographic, social and economic characteristics of the disabled persons

Part-III has been divided into three sections. It examines government services for the disabled persons in terms of developing national and regional institutes to support and create conducive environment for equal opportunities for disabled persons. Part-III also examines services and facilities provided by these national and regional institutes to disabled persons in India. The budget allocations for the disability sector welfare have also been presented in this section. Last section examines the concessions and other benefits provided to disabled persons for creating equal opportunities for their integration. It also analyses the status of implementation of the PWD-Act 1995 provisions in the states in India and by the central government.

Part-IV examines services and other facilities available for disabled person in the Delhi Metropolitan region. The analysis has been attempted both though primary and secondary sources of information. A details field survey was conducted in Delhi selecting 83 NGOs and voluntary organizations and 63 beneficiaries. The respondents included NGOs, Government organization personnel as well as disabled/-impaired persons seeking support from these organizations. Detailed analysis of the existing services as well as required services has been attempted on the basis of the field survey. Last section of the part documents the 'Good Practice- Initiatives' of NGOs and government organizations providing support to disabled persons in Delhi region.

Part-V of the report presents the broad conclusions and recommendations of the report. The recommendations are suggested based on the field survey data analysis, discussions with target groups and stakeholders and from the deliberations of the seminar organised in Delhi, where a large number of NGOs, government officials, target groups and other stakeholders were present.

A detailed list of references, literature reviewed and bibliography scanned for the study purpose is given in Part-VI of the report. These references, disability data and bibliography has been identified in libraries visited in Delhi, web search engines through internet and material collected from government departments and NGOs offices located in Delhi.

Last Part of the report documents annexes detailing NGOs working for Disability welfare in Delhi, NGOs and beneficiaries selected for a detailed field survey, field questionnaires used for the survey and a report on the seminar entitled " Services for Differently Abled Persons in India". The seminar was organised as a part of the research report to provide insights about disability sector in India through wider participation from stakeholders and target groups.


Part-I
Disability - Definition, Types and International and National Initiatives

Defining Disability:

Defining disability is difficult to accommodate the expectations of all disabled groups. There are hundreds of different disabilities and there are, as many causes for these disabilities. Some people are born with disabilities; others become disabled later on in their lives. Some disabilities exhibit themselves only periodically like fits and seizures; others are constant conditions and are life-long. The severity of some stays the same, while others get progressively worse like muscular dystrophy and cystic fibrosis. Some are hidden and not obvious like epilepsy or haemophilia (impairment of blood clotting mechanism). Some disabilities can be controlled and cured while others still baffle the experts. Thus, finding a consensus on the different and frequently varying definitions of disabilities, whether sophisticated or practical, has never been easy. Some include total or partial impairment of senses and physical and intellectual capacities while defining disability. Others refer to a handicap or deviation of a social nature, injury or illness or incapacities to accomplish physiological functions or to obtain or keep employment. These definitions also reflect the consequences for the individual - cultural, social, economic and environmental- that stem from the disability.

Helander1: Helander gave the simplest and may be the initial definition of a disabled person. "A person who in his/her society is regarded as disabled, because of a difference in appearances and/or behaviour." In most instances, a disabled person has functional limitations and/or activity restrictions. A 'functional limitation' disability may be defined as 'specific reductions in bodily functions that are described at the level of the person'. While 'Activity restriction' disability may be defined as 'specific reductions in daily activities that are described at the level of the person'.

American Disability Act 1990 (ADA)

ADA defines individuals with a physical or mental impairment that substantially limits at least one major life activity, individuals with a history of such impairment, and people who are regarded by others or perceived as having such impairment. This definition protect people with epilepsy, diabetes, mental health conditions, amputees, and others who are able to mitigate the effects of their impairments but nonetheless encounter discrimination in the workplace and other settings because of fears, myths and stereotypes of individual employers and other covered entities. ADA has categorised disability physical and mental disability groups:

Physical disability: It includes . . . "Having any physiological disease, disorder, condition, cosmetic disfigurement, or anatomical loss that . . . affects one or more of the following body systems: neurological, immunological, musculo-skeletal, special sense organs, respiratory, including speech organs, cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine [and] limits a major life activity . . .. Having a record or history of a disease, disorder, condition, cosmetic disfigurement, anatomical loss, or health impairment . . . which the employer knows . . .. Being regarded or treated . . . as having, or having had, any physical condition that makes achievement of a major life activity difficult. Being regarded or treated . . . as having, or having had, a disease, disorder, condition, cosmetic disfigurement, anatomical loss, or health impairment that has no present disabling effect but may become a physical disability"3.

Mental disability: It includes . . . "Having any mental or psychological disorder or condition, such as mental retardation, organic brain syndrome, emotional or mental illness, or specific learning disabilities, that limits a major life activity . . . . Having a record or history of a mental or psychological disorder or condition . . . which is known to the employer . . .. Being regarded or treated by the employer or other entity covered by this part as having, or having had, any mental condition that makes achievement of a major life activity difficult. Being regarded or treated . . . as having, or having had, a mental or psychological disorder or condition that has no present disabling effect, but that may become a mental disability . . ."4

Australia Disability Discrimination Act, (ADDA) 1972

Disability in relation to a person, means

  1. Total or partial loss of the person's bodily or mental functions; or
  2. Total or partial loss of a part of the body; or
  3. The presence in the body of organisms capable of causing disease or illness; or
  4. The presence in the body of organisms causing disease or illness; or
  5. The malfunction, malformation or disfigurement of a part of the person's body; or
  6. A disorder or malfunction that results in the person learning differently from a person without the disorder or malfunction; or
  7. A disorder, illness or disease that affects a person's thought processes, perception of reality, emotions or judgment or that results in disturbed behaviour and includes a disability that:
    1. Presently exists; or
    2. Previously existed but no longer exists; or
    3. May exist in the future; or
    4. Is imputed to a to a person.

British Disability Discrimination Act (BDDA), 1995

Disability is a physical or mental impairment, which has a substantial and long-term adverse effect on his ability to carry out normal day-to-day activities. In order to apply durability test, the British Act uses three different terms: loss of faculty, disability and disablement. These are meant to be separate concepts.

Loss of Faculty-

Loss of faculty is any pathological condition or any loss or reduction of normal physical or mental functions of an organ or part of the body. A loss of faculty in itself may not be a disability but is an actual cause of one or more disabilities, e.g., the loss of one kidney.

Disability-

A 'disability' means an inability to perform a normal bodily or mental process. It could either be complete inability to do something (such as walking) or it can be partial inability to do something (such as one can lift weights but not heavy ones).

Disablement-

It is the sum total of all the separate disabilities an individual may suffer from. It means an overall inability to perform the normal activities of life and the loss of health, strength and power to enjoy a normal life. While assessing an individual his/her physical and mental condition, inconvenience, genuine embarrassment or anxieties are taken into account.

India: Persons with Disabilities Act 1995 (PWD-Equal opportunities, Protection of Rights and Full Participation)

Disability is defined a person suffering from not less than forty per cent of any disability as certified by a medical authority. The disabilities identified are; blindness, low vision, cerebral palsy, leprosy, leprosy cured, hearing impairment, locomotor disability, mental illness and mental retardation as well as multiple disabilities.

The National Sample Survey Organization (NSSO), India:

The NSSO that conducted survey of persons with disabilities in 1981, 1991 and 2002 in India, considered disability as " Any restriction or lack of abilities to perform an activity in the manner or within the range considered normal for human being". It excludes illness /injury of recent origin (morbidity) resulting into temporary loss of ability to see, hears, speak or move.

International Labour Organization (ILO):

The ILO in its Vocational Rehabilitation and Employment (Disabled Persons) Convention defines a disabled person as an individual whose prospects of securing, retaining and advancing a suitable employment are substantially reduced as a result of duly recognised physical or mental impairment. The Declaration on the Rights of Disabled Persons, the term " Disabled Person" means, " Any person unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and / or social life as a result of deficiency, either congenital or not, in his or her physical or mental capabilities".

United Nations: Standard rules on the Equalisation of Opportunities for Persons with Disabilities, 1994

'Disability' summarizes a great number of different functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness.

The term 'handicap' means the loss or limitation of opportunities to take part in the life of the community on an equal level with others. It describes the encounter between the persons with a disability and the environment. The purpose of this term is to emphasize the focus on the shortcomings in the environment and in many organised activities in society, e.g., information, communication and education, which prevent persons with disabilities from participating on equal terms.

World Health Organization (WHO): International Classification of Impairments, Disabilities and Handicaps (ICIDH) in 1980.

The ICIDH provides a conceptual framework for disability with three parts:

World Health Organization: International Classification of Impairments, Disabilities and Handicaps (ICIDH) in 2001.

The document, referred to as the ICIDH-2, is officially titled the "International Classification of Functioning and Disability," or ICF . Under this new system, the three concepts of impairment, disability and handicap have been replaced by two concepts -

"Body functions and structures" (replacing "impairment"); and "Activities and participation" (replacing "handicap") - which are thoughts to extend the prior categories to permit the description of positive as well as negative experiences. The prior concept of "disability," or "functional" abilities or inabilities, is now conceived of as an umbrella concept applicable to either the body perspective, or to the individual and society perspective. The new system explicitly contemplates an assessment of "environmental factors," including the physical environment, the social environment and the impact of attitudes, and of "personal factors," which correspond to the personality and characteristic attributes of an individual.

Disability types:

Disabled people do not form a homogenous group. They may be, the physically disabled, mentally retarded, the visually, hearing and speech impaired, those with restricted mobility or with so-called "medical disabilities" and learning disabilities. They can broadly be classified as Physical and Communication, Mental, Learning and Medical disabilities.

  1. Physical and Communication Disabilities:

    Physical and Communication disabilities involve either loss of vision, physical movement, communication skills or a weakness or change in normal motor control. Some physical disabilities are present at birth (congenital) or are acquired due to illness, accident, or unknown causes. Loss of vision leads to complete blindness or low vision, loss of movement is often caused by spinal cord injury (damage to the nervous system) or by physical trauma such as severe fracture, burns or the amputation of a limb. One of the most common physical disabilities in young people is, cerebral palsy (CP). It produces disturbances of voluntary motor control ranging from clumsy and awkward movements to little or no coordinated movement. Individuals with CP can have related speech problems, as well as impaired hearing or vision. Other conditions such as muscular dystrophy, multiple sclerosis and amyotrophic lateral sclerosis, produce similar types of changes in physical functioning.

    1. Visual impairment (VI):
      Blindness: 'Blindness' refers to a condition where a person suffers from any of the following conditions, namely -total absence of sight; or visual acuity not exceeding 6/60 or 20/200 (snellen) in the better eye with correcting lenses; or limitation of the field of vision subtending an angle of 20 degrees or worse.

      Person with low vision - A person with impairment of visual functioning even after treatment or standard refractive correction but who uses or is potentially capable of using vision for the planning or execution of a task with appropriate assistive device.

    2. Hearing Impairment (HI)
      Whose sense of hearing is non-functional for ordinary purposes in life? They do not hear/understand sound at all, even with amplified speech. The cases included in this category will be those having hearing loss of more than 60 decibels in the better ear (profound impairment) in the conversational range of frequency or total loss of hearing in both ears.

    3. Locomotor Impairment (LC).
      Locomotor impairment is disability of the bones, joint or muscles leading to substantial restriction of the movement of the limbs or a usual form of cerebral palsy and autism. Some common conditions giving raise to locomotor disability could be poliomyelitis, cerebral palsy, autism, amputation, injuries of spine, head, soft tissues, fractures, muscular dystrophies etc.

      • Orthopedic disability: A person inability to execute distinctive activities associated with moving both himself and objects, from place to place, and such inability resulting from affliction of either bones, joints, muscles or nerves. It could be poliomyelitis, amputation, injuries of spine, head, soft tissues, fractures, muscular dystrophies etc.
      • Cerebral Palsy: A condition of Motor dysfunction of a person resulting from brain insult or injuries occurring in the pre-natal, peri- natal or infant period of development that affect movement control. The injury may be a brain infection (bacterial meningitis, viral encephalitis) or head injury before birth or following an accident.
      • Erb's palsy, Brachial Plexus Palsy, or Shoulder Dystocia: A condition when excessive lateral traction is applied to the fetal neck region during delivery. This can cause the Childs nerves to be torn, resulting in a limp arm. Tearing of these nerves can cause permanent paralysis of the arm.
      • Autism: Autism is a complex developmental disability that typically appears during the first three years of life. It is the result of a neurological disorder that affects the functioning of the brain. It is a developmental disability typically affecting the processing, integrating, and organizing of information that significantly impacts communication, social interaction, functional skills, and educational performance.

    4. Leprosy or 'Leprosy cured person' means any person who has been cured of leprosy but is suffering from -
      • Loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifest deformity;
      • Manifest deformity and paresis but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity;
      • Extreme physical deformity as well as advanced age that prevent him from undertaking any gainful occupation, and the expression 'leprosy cured' shall be construed accordingly.

  2. Mental, psychological illness and Mental Retardation:

    1. Mental, psychological Illnesses: These encompass Schizophrenia, anxiety disorders and depressive disorders. Schizophrenia is a highly complex disorder, which is caused due to a series of chemical changes in the brain. It usually occurs between the age groups of 15-25 years and is characterized by fragmented thoughts followed by an inability to process information. The condition affects the individual's family, professional and social life making him incapable of functioning normally. Surprisingly their intelligence is not affected and many of them are capable of leading partially normal life if they follow their regular pattern of medication and rehabilitation programmes such as those offered by half-way-homes.
    2. Mental Retardation: The definition includes 'any person who is unable to ensure himself/herself, wholly or partly, the necessities of a normal individual or social life including work, as a result of deficiency in his/her physical or mental capability'. A condition characterized by abnormal brain development in the womb not corresponding with normal physical growth. Their learning ability, reasoning power and judgment all develop at a slower pace. Accidents, poisoning, or illness after birth can be a cause for mental retardation. Many of the mentally retarded people are able to participate in activities with non-disabled people given an appropriate adaptation and support. Others may require a long-term structured programme. With adequate training and education such persons can be more self-reliant citizens. They can be found holding non-skilled or semi skilled jobs and can be made to effectively integrated into the social structure. Mental retardation is divisible into the following four categories.
      1. Mild retardation IQ - 50 - 70
      2. Moderate retardation IQ - 35 - 49
      3. Severe retardation IQ - 20 - 34
      4. Profound retardation IQ under 20
  3. Learning Disabilities:

    It is a disorder, which affects the basic psychological processes of understanding or using written or spoken language. This disorder affects development of language, speech, reading and associated communication skills needed for social interaction. These children have deviant activity level, average or above average intelligence with perceptual disorders, problems in reading, writing, spelling & arithmetic, delayed or slow development of speech articulation, short attention span, frequent changes in mood, low self esteem, low or below average social competence, impulsive, problems in motor activities and spatial organization, poor temporal concepts, passive, lacking strategies for tackling academic problems, having inadequate grasp of what strategies are available for problem solving and do not believe in their abilities.

    Conditions such as brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia are examples of learning disabilities.

  4. Multiple Disabilities:

    A combination of two or more disabilities as defined in clause (i) of section 2 of the Person with disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 namely Blindness/low vision Speech and Hearing impairment Locomotor disability including leprosy cured Mental retardation and Mental illness.

  5. Medical Disaisabilities (MD):

    A medical disability can be defined as a condition that requires intervention such as medical treatment, prescription drugs, and/or accommodation to help a person participate in life's activities. Medical disabilities may be acute or chronic, visible or invisible, and the type of support needed is diverse. The chronic health problems include fibromyalgia, chronic fatigue syndrome, arthritis, kidney disease, allergies, cardiovascular problems, cancer, diabetes, and HIV infections, as well as respiratory and gastro-intestinal disorders. Recognizing medical conditions may be difficult because many are "hidden". The primary diagnosis may be accompanied by secondary impairments in mobility, vision, hearing, speech, or coordination depending on the nature and/or progression of the condition. Medical disabilities can be classified into:

    Autoimmune Illness: It includes fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, asthma and lupus. A lowered immunity can result in frequent illnesses. Patients can experience flare-ups, side effects of medication, or hospitalisation.

    Blood serum disorders: It includes haemophilia, thalassemia, sickle cell anaemia, HIV/AIDS, and other disorders. Blood serum disorders can be characterized by severe crisis periods with extreme pain and other complications, which may necessitate hospitalisation.

    Epilepsy: It is a disorder of the central nervous system, which results in a seizure. For many adults, epileptic seizures are largely controlled by anti-convulsion medication. There are four major kinds of seizures, distinguished by the degree of convulsion and the extent to which the person is conscious. Grand mal epilepsy involves sudden and violent convulsions and loss of consciousness, whereas Petit mal epilepsy is milder and involves little or no loss of consciousness. The person may stop what he/she is doing and stare momentarily.

    Cancers: It can occur in almost any organ system of the body, the systems and particular disabling effects will vary greatly from one person to another. People may experience visual problems, lack of balance and coordination, joint pain, backaches, headaches, abdominal pain, drowsiness, lethargy, difficulty in breathing and swallowing, weakness, bleeding, or anaemia. The primary treatments for cancer can cause additional effects such as violent nausea, drowsiness, and fatigue. Medical treatment can result in amputation, paralysis, sensory deficits, and language and memory problems.

    Cystic Fibrosis (CF): It is a disease affecting the cells lining the pancreas, small intestines, sweat glands, and lungs. CF's respiratory symptoms are chronic and eventually lead to fatal lung infections.

    Muscular Dystrophy: It refers to a group of hereditary, progressive disorders that most often occur with young people, producing degeneration of voluntary muscles of the trunk and extremities. Atrophying of muscles results in chronic weakness and fatigue and may cause respiratory or cardiac problems. Walking, if possible, is slow.

    Multiple Sclerosis: is a progressive disease of the central nervous system, characterized by a decline of muscle control. Symptoms range from mild to severe and may include blurred vision, legal blindness, tremors, weakness or numbness in limbs, unsteady gait, paralysis, slurred speech, mood swings, or attention deficits. Periodic remissions are common and may last from